Saturday, 21 April 2012

It's all in your Head

Every time I'm in hospital, I learn something.

Sometimes the lesson's been very, very hard to learn. To survive a long term illness, you have to be prepared to search your soul. You have to be brutally honest with yourself. You have to set goals every day and there are lines you must never cross.

However painful or uncomfortable, the lesson is what it is and you can't run from it. It follows you. Because no matter what happens, you can't wish the ill away. You can dump a selfish lover or sell a dingy flat. You can change your job or your friends but you can never wish the ill away.

I've seen great cruelties. There it is, it's a fact of life. There are many excellent nurses and dedicated doctors, but wherever there is vulnerability, there is cruelty.

But the greatest cruelty of them all is doubt.

In the 8 days I've been in hospital, I've met a woman with crohn's. Hard to believe, I know, but her crohn's is even worse than mine. She's had more operations, she gets more symptoms. But even now, after all those years, she still has to fight the doubt. The casually dismissive GP, the suspicious pain specialist, the nurse who thinks she knows best. And a little voice, still whispers in her quiet moments "It's all in your head."

There was the girl celebrating her 21st birthday, today, alone in an NHS bed. Her face was gaunt, her bowels had all but stopped working, her heart rate was all over the place, her joints frequently dislocated. But for the last two years she'd been told that these oh-so-physical of symptoms had to be "all in her head"

Then I met the lady in the wheelchair. Frequently admitted to intensive care, unable to breathe. Unable to walk, unable to eat, fed through a tube. But guess what? A consultant, somewhere way back in the mists of time had concluded she had "conversion disorder". You know what that means? Yup, you guessed it. It's "all in her head" Actually she just got a diagnosis, but that one doctor, all those years ago ensured that no-one would take her seriously for nearly a decade.

And then there's me. 6 years of vomiting, 6 years of pain, tears on the way to school, delirious through long nights of misery. But I was "just" anorexic or "just" depressed. I was surely bullied at school or my parents beat me? Either way it was "all in my head".

Do you know what that does to you? Do you know how much strength of character it takes to face 6 doctors, all stood around your bed and tell them you think they're wrong? To refuse a course of treatment you know is irrelevant? To do it for weeks, months, even years, until you find a saviour? A good doc after all the bad docs?

It doesn't stop with a diagnosis. Even with a label, you then have to justify your symptoms. If they don't fit neatly into the box the label came on, it must simply be "all in your head." You can spend all day telling a doctor you feel miserably nauseous, but if it isn't a symptom of your condition, he'll conclude it's "all in your head." You might be told that you "think about minor aches and pains too much" You can claim that a drug gives you a rash or a fever, but if it isn't a known side effect, the doctor will reassure you that it's "all in your head" Only when you find yourself with septicaemia will anyone begin to listen. If you get too much pain, you'll get a new label - "drug seeker" to go on your box. If later, they find a huge, weeping abscess to explain the pain, you won't quite be able to scrape the label off the box again.

Do doctors realise how dangerous this is? Do they understand that because of this constant doubt, we all wait until our head has actually fallen off before we can be dragged kicking and screaming to accident and emergency? Us sickies all know - there is only one thing worse than trying to get an out of hours doctor to see you and that's having to do it on a bank holiday.

We wait until we can't walk, talk or eat before we'll go near a hospital bed. We spend weeks longer than we should convincing ourselves we're really fine. In fact, convincing ourselves that it's "all in our heads"

You find yourself justifying things with friends that you don't need to explain. You doubt yourself - did you cry off your sister's birthday because you were heaving over the sink, or did you somehow make it happen because you didn't really want to go? Did you come into hospital for a nice rest and a few weeks away from the kids? Are you really just an attention seeking drama queen?

It never goes. Every new symptom brings a new set of challenges. Every test that comes back fine makes you wonder if this really is the time it's "all in your head"

Luckily I have an amazing consultant. Every time I'm in hospital, waiting for surgery, he brings a scrummage of student doctors to come and play Diagnosis or No Diagnosis. I have an atypical case of crohn's and it's not easy to diagnose from my symptoms.

A dozen or so pale and studious looking very-young-people (they didn't used to be so young....) troop into my cubicle and look nervous. Before they are allowed to ask me any questions, or examine me at all, my consultant picks on one poor unsuspecting soul and asks "Right, what can you tell me about this patient" He will invariably reach for my notes, but my consultant stops him.

The student squirms for a while (I can tell how much my consultant likes or dislikes them now by how long he makes them squirm for) and just as his discomfort starts to seep out onto the ward, my doctor does his party trick :

"Well, Sue has her own blanket, her own tea cup, her computer and a picture of her family. That tells you she's done this many times before. It tells you she knows she will be here for weeks not days. There are non-fiction books on her dresser, that tells you she's perfectly intelligent enough to explain her symptoms to you and she has no flowers or cards. That tells you she's been in for more than a week, because no-one thinks to send flowers after that and no-one sends cards to people who are always ill. You can be fairly sure that this patient will give you an informed, specific account of her illness and her current symptoms. If you listen to what she tell you, you've probably got 95% of your diagnosis."

After 30 or so hands all take a turn at tapping my chest or listening to my heart or palpating my bowel, he leaves them with a warning :

"Don't ever be one of those doctors. If you cannot find out what is wrong with a patient, you have failed, not the patient. Don't ever blame a patient if you can't find out what is wrong with them, blame yourself. Lazy doctors blame the patient. Good doctors listen to them.

And with that, he wafts off in a cloud of quiet importance.

Doubting your patients, judging them, labelling them, is dangerous. But most of all it's cruel. It leaves scars deeper than any surgeon. Yet I've met precisely four people to talk to so far this stay and it was ALL "all in their heads." Unlikely, isn't it.





143 comments:

  1. Good grief Sue. As if you haven't enough on your plate. I wish you God speed in your endeavours.

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  2. How true! I have no diagnosis and have often been treated this way. It's frightening to think how many serious conditions are ignored and labelled in this way. I especially like "you have failed, not the patient" - we are made to feel as ifit is a lifestyle choice! Thank you for putting it so eloquently.

    Hope you are feeling better today

    Lynn

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  3. I can very much relate to this. Just one recent example - I outlined the protocol for taking lithium blood tests to my,now, former surgery. I was ignored and my letter of complaint to them was sent to my consultant so that he could 'put me right'. My consultant agreed with me and said my argument was spot on!! The surgery still claim they were correct.

    You cannot question your surgery - even if they are incorrect, acting outside the NHS terms and conditions, breaking the law. They have to be 'right' - you cannot rationilise with them. So you leave. But what happens if you cannot argue with them, if you are not able ..... ? Extremely dangerous .....

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  4. Hi Sue, This article will speak for many of us. I have Fibromyalgia and for years i've been told that its 'all in my head'. Not by my own GP fortunately who has been brilliant but by consultants, DWP doctors, especially physiotherapists and people who've read articles by the likes Of Rod Little etc. It is indeed frustrating. I remember when i was first suffering, I was still in work at that time. I was a gardener and was sent to a physio. She asked me loads of questions and then told me that I had to do more exercising, that lack of exercise caused depression and that was what was leading to so much pain. I almost screamed with frustration, I was a professional gardener. How much more exercise could I have done. But that incident also taught me something else, medic who don't even take time to read through notes. If she had she'd have noticed that i;d had a few episodes of being taken to hospital from my work, the physical exercise exacerbated Fibromyalgia. I had another experience of a doctor who didn't have a clue some years ago. One of the problem I have is muscle spasms. They are agony and one night they just went on and in, they were in my chest. My wife wondered if it was my heart and phoned the doctors surgery. This was late at night. I got a locum, a doctor standing in for the night shift. He asked if i'd had pain killers. I told him i;d taken dihydrocodeine. He asked me how much and I told him i;d had 6 tablets that day. He then told me to get a paper bag, take deep breaths in an out of it and relax. He then informed me that in his opinion I had a drug problem and it was for someone else to deal with. I put in a complaint. He looked at my postcode, its an area with multiple deprivation problems and just assumed I was another drug addict trying to get some morphine. The fact Is I didn't even ask for any pain killers. if those just had a second of the pain, discomfort and tiredness we have to battle every day then they would feel ashamed.

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    1. Awful. Awful. Very infuriating. Glad you had the strength to complain.

      Btw, the "paper bag" technique is now off-limits to first aiders because it might make some problems worse. I don't know which problems. Theh first aid book did not say. This may not have been the case when your problem happened and you were told to use a paper bag, but it is now.

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    2. Hi Peter,

      'Whatever's up with me' ie, no formal diagnosis, causes these spasms. They are agonizing, especially if they occur all around the torso area.

      I just wondered if you have had appropriate medication for them yet? You should have been prescribed diazipam to take instantly as soon as you feel it coming on (letting them dissolve under the tongue); you should have a supply of that at home to take asap so that the muscle isn't damaged by the spasm being prolonged, and gabapentin to take long term so you wont experience the spasms as frequently (although you'll still have them). I had one on Thursday, but thankfully, only on one side of my torso.

      When I rang the NHS direct helpline the second time it happened because the spasm wouldn't stop, they said I should call an ambulance. Apparently if diazipam is administered anally, it works really fast. I told them I couldn't do that however. I knew that being admitted would make me much worse, and the after affects of that would take longer than the spasm to recover. When I saw my (horrible) G.P. afterwards and told him what NHS direct said, he banned me from calling an ambulance. Shouted at me actually. Fortunately, I'm out of his grasp now; he nearly pushed me over the edge with his bullying.

      The full torso spasms are called 'the hugs', and they are frequently associated with M.S. I have all of the fibromyalgia/M.E./M.S. symptoms, but no diagnosis unfortunately although there is M.S. in the family, which I only found out about years after I became ill when my birth family contacted me (I was adopted).

      The doctor who saw you was completely negligent. Even the horrible G.P. I was under at the time recognised it as a spasm. That said, a consultant years ago made me blow into a paper bag until I nearly passed out, then he declared that my symptoms were a 'panic attack'; what is it with doctors and blowing into paper bags?

      When the spasms started, a pain specialist also said that the spasms were based on a panic attack. Er, well yes, when they hit you before you know what they are, you do panic a little to say the least!! I thought I was having a heart attack, and it was more painful than end stage labour!! She also said I had a 'complex history'; what that has to do with a physical illness I'll never know.

      I was livid when I read the letter she had sent to my G.P. Not only had she said that, and intimated that my illness was 'all in the mind', but apparently, I had imagined that I had a degree!! You couldn't make it up. So instead of benefiting from what the pain clinic has to offer, I was sent to their psychologist. When I refused to attend their gym to do exercises two mornings a week (DER! AS IF!) the psychologist said that he would discharge me if I did not comply. So I told him to discharge me, and now I cannot have any access to the pain clinic unless I agree to attend two full days a week (mornings exercising in the gym, afternoons attending lectures on how pain is 'all in the mind'). It's disgraceful.

      As Sue has said, it hard enough to cope with a long term illness, but this obsession with medics to label you as having some form of mental health condition (which is just as horrible, and I do have PTSD brought on by my illness and the way I've been treated), rather than your illness being based on a physiological condition, and the battle you have to prove otherwise is draining and humiliating. It's hard enough to be ill, but to have to justify every single thing makes it doubly worse.

      That's why I dread it if ever I'm admitted to hospital, and there are many times when I should have, but I was scared in case they took one look at my notes and declared me a malingerer, and sectioned me (this has happened to people all over the UK).

      All the best Sue.

      Clarebelz

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    3. Best wishes Sue and everyone else...

      Just wanted to confirm the above info. re: diazepam and gabapentin... It was somewhat of an accident that these two meds combined made my nerve pain a bit more manageable but you have to be careful with the gabapentin especially if you do have mild epilepsy as stopping and starting them can exacerbate seizures... I need not warn anyone of the possible addiction problems with diazepam which is why I only use it if I'm desperate...

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    4. Sue, your blog, to me, was probably the most supportive, confirming article I have read for years, and also probably one of the saddest. I realised that I was not alone. I am going through the disbelief 'frequent flyer' tag with the hospitals as I speak. They are not related to Crohn's, (I do hope your illness eases) The disbelief of my very obvious symptoms (even resulting in me ending up in a cardiac unit) and the Doctors subsequent ineptitude to diagnose, has caused more pain than anything. You really start to believe their 'all in your head' shrug of shoulder diagnosis....but then, you remember how well and active you were before and how your illness has progressed and realise, 'Actually I can't produce these very visual symptoms to order', it is their failure to diagnose and not my invention.... I have been left with heart medication, anti-vert drugs and dieuretics...and the wonderful quote of "Some people, we just can't find a dianosis for" so it will have to be our 'best guess'....but they're still prepared to give you contra indicative drugs...just to cover any eventualities and their own backsides in the event of your demise, shame on them... and thank you, for helping me feel not quite so fraudulent! :-)

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  5. I went to A&E a couple of years ago with severe breathing difficulties. As soon as my dad told them I had ME, they dismissed it as "just a panic attack" and left me to it, in severe discomfort, struggling to breathe. Eventually we found out it was an allergic reaction to some new medication I'd been put on. What if that allergic reaction had been worse? Might I have died from my "panic attack?"

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  6. Thanks for that Sue. Very much appreciated xx

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  7. "There was the girl celebrating her 21st birthday, today, alone in an NHS bed. Her face was gaunt, her bowels had all but stopped working, her heart rate was all over the place, her joints frequently dislocated. But for the last two years she'd been told that these oh-so-physical of symptoms had to be "all in her head"

    SOOOOO familiar. Elhers Danlos Syndrome, the most wrongly and under diagnosed disability, often told we are hyperchondriacs, and we have to justify our symptoms to sceptical Dr's. I myself faced 2 this week alone.

    I myself have faced chronic spinal problems, frequent dislocations, autonomic disorders, chronic pain, serious internal damage, and it took over 20 years for a diagnosis, and even now I get condescending pain management and physios telling me that it's in my head and its my attitude to pain, here go to a seminar..... thats not going to help when I have twisted my pelvis or subluxed my hip and I cannot walk or drive to get my children from school.

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  8. This rings so true, especially as a Mum for a disabled child - who is now 28. His Kidney disease was diagnosed at birth as it was fairly obvious that some thing was wrong. It took 26 years for his HMS syndrome to be diagnosed and it probably caused the Kidney problems. Both me - as an anxious mum and he were frequently told ' we were imagining his unexplained aches and significant pains'. Eventually some one listened to the research that I had done and we got the much needed referral - the result - he has significant HMS,and some twisted long bones that should have been picked up at Childhood.
    Along the way I have so much self doubt, faced many dismissive medic's. One little ray of sunshine was one of my son's paediatric consultant told his students to always listen to the parents. I had noted that he was not recovering from yet another infection as well as usual. It turned out that he had a second infection requiring an additional medication. Sadly,I still have to throw a strop from time to time to get G the care he needs. Reading your blog today reminds me that many others are having the same fight and that persistence can pay off eventually. I have also had my own health probs but after 54 years I got the diagnosis this year, after a great doctor listened to me. I find as I bumble through life that so many problems are down to poor communications - mainly down to a lack of listening.
    I send my best wishes for your recovery.

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  9. What a great teacher that Consultant is.

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  10. with you Sue!; that small small internal voice of doubt........it's sneaky and wrong and we do have really only a Notional Health Service that is geared to deny, distrust and jump to their own small minded and callous and cruel conclusions and worse - false and long lasting tainted labels; for so much of the time.......and it's OUR time they are ruining.....

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  11. it's even worse when it IS all in your head. With a mental health problem, even physical health problems are seen as mental health related. If you are loosing weight, must be stress. By the time they see the true cause its too late, and makes it harder to fix.

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    1. Yes, the figures for people with pre-existing mental health problems dying from conditions like cancer are shocking.

      When a bipolar woman reports that she's found a lump on her breast the automatic response of most medical practitioners is "you're imagining the lump because you're mad." By the time doctors acquiesce to investigating the cancer has progressed to a point where it's untreatable.

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    2. I spent over ten years with severe back pain and regularly ended up in a&e when it went into spasm and I either passed out or convulsed because of the pain. Because I also have a mental health diagnosis, my gp refused to investigate and insisted that it was 'merely' a symptom of depression and I should go to relaxation classes. So I would keep going, push through the pain (after all there was nothing wrong and it was all in my mind) and once again would end up in a&e. Eventually, after two such episodes within a short period of time, I insisted on being sent at least for an x-ray. What the hospital saw on the xray made them insist on taking me for my blood tests in a wheelchair. I never did get an apology from my gp.

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  12. I identify with the response that if something is not a recognised symptom of a condition then it's irrelevant. My 15 year old, daughter has reported visual disturbance and migraines following heart surgery, but you guessed it...it's all in her head, or she must have had it before the surgery but just not noticed. Not good enough!

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    1. It's well documented that if someone is artificially perfused there is a risk of cerebral changes

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  13. I hope someone manages to get this blog in front of Andrew Lansley. I am lucky to have a terrific GP and I have no "difficult" conditions, only very normal diabetes and arthritis, but I have friends, as we all have, who've suffered in this way. More power to your elbow, Sue.

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  14. Sue, this is yet another brilliant blog post. Wishing you a speedy recovery. Linda x x x

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  15. In November I was referred to a psychologist to deal with my post-viral fatigue syndrome; yesterday I was told the psychologist wasn't going to see me as I didn't have a mental health issue. Does that mean it's not all in my head?!

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    1. During my diagnosis period, i had psychiatric investigation as well as the more physical tests. I got a clean bill of mental health. Years on, that letter is in the depths of my file along with the results of the physical tests where no one will ever read it again - and there's no sane-sounding way to tell someone "but the psychiatrist said i was sane!"

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  16. I first encountered the "it's all in your head" diagnosis when I was 15. My grandparents died that year and shortly afterwards I started to suffer from chronic diarrhoea and stomach cramps that made it impossible to leave the house in case I had an accident. I was bloated, in constant pain and never off the toilet. I missed the best part of 4th year at school, because I didn't feel able to leave the house. My GP couldn't find any reason for my symptoms and told everyone - my mother, the school and her colleagues - that I was a hypochondriac and there was nothing wrong with me. I nearly got expelled from school because of absenteeism. I was lucky to get any qualifications after missing so many lessons, but I scraped through my exams and got 6 'O' grades. After leaving school I lost a couple of jobs through absenteeism. It wasn't until I was in my 20s that I was diagnosed with irritable bowel syndrome, which my new GP surmised was brought on by the stress of losing my grandparents. Once I knew what it was I had to work out what my trigger was, but it took several more years of pain and discomfort before I discovered it was fizzy drinks. I'm fine most of the time, but stressful situations bring on the occasional bout.

    My second "it's all in your head" diagnosis came at the hands of the same GP who couldn't diagnose my IBS. When I was 19 I suffered my first bout of bad depression. I was unemployed and had lost touch with my friends, who were all working, as I didn't have the money to go out and socialise with them. I went to my GP for help and she called me a hypochondriac, a time-waster and a layabout. She told me to "pull my socks up" and to stop wasting her valuable time. There were people out there with "real" illnesses and I should get a job and stop complaining. Had I not been the person I am, I might have gone home and opened my wrists right there and then. Instead, I got angry. I called her lots of names and got flung out of the surgery. I managed to find a job and got better on my own. It wasn't until I was in my mid-twenties that I was officially diagnosed with depression, which I've battled on and off for 20 years now. I've only just started taking medication for it, after a particularly bad episode following a short illness.

    My latest "it's all in your head" was within the last 4 years. I started experiencing strange symptoms. I would get pins and needles in my hands or my feet, or my face. I would suddenly lose the power in my limbs. I used to go to Zumba, which I did twice a week. I was getting fitter all the time, then one day, half way through a class, I suddenly felt as if someone had attached weights to my arms and legs. This happened a few times, so I went to the doctor. They ran blood tests and told me I was fine apart from some inflammation. My tests always show some sort of inflammation, so this wasn't unusual. They did usual neuro obs (push me, pull me, close your eyes & touch your nose, etc.) and I passed with flying colours. I saw 6 different GPs, all with the same result: we can't find anything wrong with you. It wasn't until I started to lose the vision in my left eye that they took me seriously and sent me for an MRI when I was diagnosed with MS. It's in the early stages, but it's there. Now I'm learning to live with that and it hasn't been easy. It's made my depression worse (I don't deal well with being ill) and I find I don't have the energy to do the things I used to. I've lose myself. I hate it. But I have to learn to deal with it the best I can and get on with it. There are people, such as yourself, who have it far worse than I do.

    I admire your courage and determination. Your stories about your battle with medical professionals fill me with fear and horror. I am not looking forward to a life-long battle to be taken seriously. But I'll have to wait and see how that goes.

    Stay strong, Sue. You are a warrior!

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    1. "My bloods always show some inflammation, so this wasn't unusual"

      !!!!! Why on earth weren't they finding out what the inflammation WAS?

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    2. I'm just a teacher, and I diagnosed MS at the first symptoms you described. Am I in the wrong job, or are the doctors you saw?

      Friend and colleague suffered with stomach problems for ages, and her GP scratched his head in puzzlement, till one day she couldn't get off the sofa. He sent her to hospital, where she was put in a ward full of alcoholics. She and her husband were told they had to admit she was an alcoholic before they could treat her "liver problems" but they couldn't 'cos she wasn't. Eventually she was diagnosed with ovarian cancer. Treatment was too late to save her and she was dead within a year, in her early 40s. As far as I'm concerned, the bastards killed her.

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    3. Not investigating inflammatory markers is downright negligent IMHO

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    4. Inflammatory markers being raised is always ignored in my experience. My bloods were done two months ago with raised markers. I'm still waiting on "investigations" at hospital but haven't managed to get in. Unless it's "You're about to die right now" they just don't seem to do much. They seem to think raised markers which are somewhat inflamed can be "normal". Seriously.

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    5. I've always had inflammation show up in my blood tests. I was always spraining my ankles as a child, which has left me with permanent damage to my feet, and I had a fall when I was 20 which left me with back problems, so the doctors expect to see inflammation in my blood tests. But the pins and needles and limb fatigue should have been enough to get them to examine me further. It was only because I burst into tears in my GP's surgery when he offered me ibuprofen for my loss of vision that he took me seriously and referred me to the eye hospital, who immediately referred me to Neurology for a LP and CT scan, which was followed by a MRI. I'm currently waiting for a 2nd MRI to see if there's been any change, after a relapse last year. I'm claustrophobic, so I need to go to the open scanner at the local childrens' hospital. I've been waiting for an appointment since November last year. I hope to hear from them very soon.

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    6. Hi Chocolate Girl,

      Most people don't go around always spraining their ankles. I am the same. Recently saw a pain doctor who told me to look up "Begnign Joint Hypermobility Syndrome" It's difficult to find info under that name so also try hypermobility syndrome & hypermobile joints. Don't be thrown off by "benign", it's not. It's a form of EDS (EDS III - hypermobility) & another symptom is IBS, due to the collagen issues. I might be off track, but if you want to look into it then go ahead. Best wishes with your scans, I'm sorry you have to go through it with your claustrophobia. Sending peace for that time xxx

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    7. hello,

      I agree with Anonymous. An MRI may well not show anything if it is EDS III (I won't even use 'Benign JHS 'cos it's such a misleading label). So it might be more useful to ask for an urgent referral to an EDS expert while you're waiting for the MRI.

      If it is EDS, you'll need proper pain relief (Ibuprofen probably won't cut it); proper physio from people who know the condition, aimed at improving core strength and coordination; and by the sound of it specialist eye and neurology support, again from people who know the condition.

      Pins and needles can be down to over-stretchy collagen affecting the way the nerves work. Magnesium supplements have helped me a lot with limb fatigue.

      This may be of interest: http://theeyedocblog.com/2010/03/30/ocular-manifestations-of-ehlers-danlos-syndrome/

      Again, sorry if this is misleading or irrelevant, hate to be shouting 'Are you sure you don't have EDS?' all over this blog, but there are enough 'red flags' to make this seem worth looking into.

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  17. What an exceptional training consultant, sounds more like someone from a fictional novel, may his students mark his words and always remember to act on them.
    Regards to you and your progress

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    1. I agree, so rare to find such an exeptional consultant. I think I would cry if I had a doctor who was that nice.

      And, sorry to be pedantic, but all novels are 'fictional' :-D

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  18. About finding the strength to tell a bunch of doctors they are wrong, over and over again - I know something of this, but not that extreme. I've only had to do it once, and to one doctor, and hope I never have to again. I felt extremely uncomfortable, telling a doctor that no, I don't want a full corneal transplant in the eye I can't see out of, I want the treatment that will stop my good eye getting worse, even though in his words "it hadn't got any worse since we last saw you" - why then do I need a new pair of glasses? Why is everything blurry? I think I know what I can and cannot see, and I know my sight has got worse.

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  19. Sadly, this is an experience I saw first hand with my mother. Admitted to hospital via A&E and needing blood transfusions following a haemorrhage, subsequently no one on the ward ‘believed’ the extent of her haemorrhaging until it came. She was on the point of being discharged when she had another so it was then plain to see. It made me wonder whatever happened to ‘listening to patients’? There was also a mix up over anaesthetic for a procedure which I had to sort out. My mother had consented only on the basis of having a light general; she really didn’t want to be conscious. They were planning a routine procedure with sedation. And to be perfectly honest I think the investigative procedure was also procedure – and hence a waste of money – as it was obviously not the point of haemorrhaging. My late grandmother went through exactly the same thing at the same hospital.

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  20. You are right Sue, you do have to be strong. You do have to stand up to the medical experts sometimes and say 'no, this isn't right".

    I did that for two and a half years to eventually coalesce my 'all in the head' problems into an MS diagnosis.

    A family member didn't do the same and accepted the brush-offs, and eventually ended up having surgery for a brain tumour; he'd be better off now if he'd had that surgery sooner. Yes, he got brushed off with stress and all the usual 'all in the head' too.

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  21. "Doubting your patients, judging them, labelling them, is dangerous. But most of all it's cruel. It leaves scars deeper than any surgeon."
    Oh how I wish every Doctor, physio & nurse had to memorise these words and recite them every morning.
    I had an accident, a fall from a height of 6 feet, I hit concrete, landing flat on my back. I immediately had excruciating pain in my neck and arm. My sister took me to A & E. They x-rayed me....no obvious fracture....then they tried to send me home. My sister, who could see the extent of my pain and shock in my face, refused and insisted they admit me.
    The next morning they shipped me out to a local hospital....by then I was exhausted by the pain and only just hanging on to my composure. More x-rays revealed that the natural curve of my neck (lordosis) had reversed...this was ignored and put down to the fact that it was the way I was holding my neck. At this point I realised that they did not believe the extent of my pain or the fact that I had pins & needles in my fingers.
    The only way I could get slight relief from the pain was by twisting my neck and chin to one side (torticollis) which made me look ridiculous but I was past caring. The doctors and nurses did not like this, they told me to relax and straighten my neck, told me not to make a fuss. When I could not comply they put me in a side room and treated me dismissively.
    The physiotherapist tried repeatedly to get me out of bed and walk me up the ward. Every time I sat up or stood up the pain was overwhelming. She told me not to make a fuss, it was only a little bit sore, only neck ache. At this point I lost it....I told her that I hoped for her sake that she never had to experience even half the amount of pain I was feeling because if she did she would really regret having just said that to me.
    Over the days that followed the pain was relentless, the pins & needles in my hand turned to numbness and gradually my arm got weaker and weaker until I could not lift it at all. I became disorientated in time and space. I tried to leave the hospital because they were doing nothing for me, but could not make it to the door of the room. My husband, who was beside himself with worry, finally spoke to the consultant and explained how i was normally very fit and active, and told him that I was very stoical and that if I was complaining of severe pain it was because ....... I was in severe pain. Finally the consultant ordered an MRI scan.
    The Scan showed that two of the discs in my neck had exploded due to the impact of the fall, their contents had crushed my spinal cord down to the thickness of a ribbon and there was a small but stable fracture in part of a vertebrae. I remember when the doctors came to view the scan results...they stood outside the door to my room, I heard the registrar say "Bloody Hell....we were wrong weren't we"! Shortly after I had a 7 hour neurological operation to pick the fragments of disc out of my spinal cord. .......Because of their disbelieving attitude I suffered a month of the most severe pain you can expereince...the crushing of the spinal cord...they might as well have tortured me. The worst of it is, that despite the horrific pain , they even got me at one point doubting myself. I can remember berating myself for imagining the pain, for being lazy, which is when I tried to walk out the hospital ....but my body took over and I collapsed.

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    1. Completely horrendous, I can't believe how negligent these people can be. I hope you complained about your treatment. (although I'd understand if you hadn't!)

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  22. Thank you finally exposing what Drs can be like. We have so many experiences of the same thing with our GPs.
    I went 8 times over a few months for a chest infection and was palmed off, but it never got better. Finally saw GP and he sent me for an x ray, but said there was no medication they could give me. The next day when I could no longer even lift my head I asked to go to a&e. There I was told I had a type of pneumonia and wouldn't have made it through the night if I hadn't gone in.
    Went to hospital for lump in my breast, consultant wouldn't even look, just said 'youre overweight, that's why you have a lump, lose weight', even though another dr at the department had felt it and was concerned. I was ashamed and embarrassed and even 3 years later, still worry about it, even though it probably was nothing.
    Took my daughter to GP with breathing difficulties, told she could have an appendicitis...after fighting to see 2 different Drs finally got told it was severe croup.
    Took my autistic/ADHD son aged 7 to GP after repeated self-harm and attempts to kill himself by running in front of cars and severe depression. Was told 'all 7 years olds want to kill themselves, didn't you? He will be fine.'. I felt like a stupid mum, but knew it was more serious. Luckily went to CAMHS and he was given anti-psychoic drugs and is so much better.
    I know of so many similar experiences with friends and family. I have no faith in Doctors at all. I would move GPs, but don't believe any of them are any better.

    So thank you for raising awareness of something we all know, but no one ever talks about.

    I hope you feel as well as you can soon, you are a very inspiring woman!
    Xxx

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  23. I sympathise so much with you Sue! I have fibromyalga and being an invisible illness that doesn't show up on blood tests you often get doubted. I am lucky that I have great doctors now but looking back there have been so many occaisions where I have been dismissed by doctors. At age 13 I started with depression, bullied at school, rows with parents, life was a living hell for me and I wanted to die but I was "too young to be depressed"! about 7 years after that I tried to slit my wrists but still I wasn't depressed! 8 years ago I was having trouble at work with colleagues and trouble with a boyfriend so the depression was bad again, I also had repetitive strain in my elbow from repetitive movements of the mouse at work, after 5 weeks off work and 2 hydrocortisone injections into the joint I was still in pain but also had the strange symptom of being totally and utterly exhausted, all the time, I would get a shower in the morning and all my energy was spent, but the doctor insisted there was nothing wrong and said I just didn't want to go back to work and she refused to sign me off any further! She did give me antidepressants then but "only to help your energy levels" and told me to get out more, make friends and exercise more. Looking back it would seem that was the start of the Chronic Fatigue Syndrome that is often associated with Fibromyalgia. It has taken a move from Oxfordshire to Derbyshire to get decent doctors who have officially diagnosed depression and understand that I know when I am getting low and need medication, and also to then get the Fibromyalgia diagnosed a year ago after a car accident which activated the pain side of the condition, and now everything falls into place for me and I finally get an answer to the terrible fatigue that has bugged my life for 8 years that no-one has believed!
    Sometimes worse than doctors not believing is those close to us not believing. I have spent years trying to explain the fatigue to my family and only now they have a diagnosis and a name can they understand. As for my other half's sister.... She descended on us with minimal warning the other weekend, I put on my smiley face and we took her out even though all I wanted was to sleep and she had the cheek to say to my other half was he sure I had fibro as she had looked it up on the internet and I didn't look to be in very much pain to her, was he sure it wasn't just psychosomatic! This when I have to walk with crutches most of the time!

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  24. Hi,
    unfortunately these stories are not uncommon. In what other profession are they allowed to blame the problem on the patient? If a car mechanic cant fix your car he doesn't blame the car he blames his lack of knowledge or experience in dealing with that kind of fault.Its crazy that Drs no longer seem to listen to patients.

    After 3 years of chronic illness I diagnosed myself via google.It took 18 months for my GP to agree to send me for the correct tests. I was diagnosed immediately by the hospital consultant and I got rid of the GP. The problem had been one hospital consultant who didn't have the knowledge to diagnose me had decided I had conversion disorder or somatisation disorder. Once that was in my notes no one would believe me.

    I even went to casualty vomitting blood at this time and was given gaviscon and sent home. All because of one Drs inability to do his job.

    Now when I am admitted to hospital - less often now because I will wait like you until I am barely conscious (my husband knows its grounds for a divorce if he calls for an ambulance!)I am treated with respect. The Drs admit they know nothing about the several rare disorders I suffer with and will actually go away and research my conditions rather than pretending they know it all.

    Thank god for your consultant and his teaching methods. Thank god for the consultant I am under now and my new GP who will ring me if he hasnt heard from me for a few weeks to check how I am doing. We need more drs like these.

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  25. The single clear indicator from this you can all draw is that through provision of the NHS, we have free at point of contact and according to need some of the finest medical minds in the world.

    My own consultants are in that vein. A five minute spell with one or two of the departmental leaders is enough to show that they are exceptionally skilled, have the manner to goes with it and most importantly, teach and inspire the next generation. Any GP who I have seen who has spent time studying under one of my consultants still recalls one of his assessment tools almost word for word. They impress in every sense of that word.

    It takes the chronically ill to recognise these people exist when media stories tend to run to misery - there is no value, no copy in a story of routine excellence.

    Thanks for posting it, Sue

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  26. When I KNEW I had MS I was sent to see a Neurologist who, with the power of his naked eyes, informed me I definitely DIDN'T have MS & I was either a) phsychologically damaged because I'm fat, b) depressed or c) have syphillis. At this point I rather stopped listening to him as I was obviously in a room with an idiot who happens to have a medical degree. By the time I got back to the car I was furious. Furious & a bit scared. Who the hell was going to believe me if someone who is a 'specialist' didn't? It took 8 months & a severe relapse before I even went to see my GP. He referred me to a, thankfully, different Neuro who immediately sent me for an MRI. End result? The MS I knew I had. All in all the whole process took me 3 years & nearly broke me. When I joined a group organised by the MS Nurse for a course of 'education & exercise', it transpired that, out of 10 of us, only 1 had been diagnosed without the inevitable 'depression' nonsense. I almost pitied the junior Neuro team who came in to see us one week as they were bombarded with our frustrations at being dismissed as malingerers when we could have begun early treatment or support.
    I wish every doctor had the same experience & mantra knocked into them as your consultant tries to Sue!

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    1. F*cking hell! That's what the doctor said to you?! It's outrageous.

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  27. Oh yes, the doubting. I know it well. I have chronic fatigue which is the favourite of doubters worldwide. I've had it for 20 years and only this year has anyone sent me for treatment. I thought I was obviously fatigued, but that I simply wasn't trying hard enough to overcome it and the fact that my GP would only refer me to one specialist meant I picked going into the mental health system for my completely unrelated depression, anxiety and PTSD.

    I get the 'you've been being treated at the local psychiatric hospital' look from the consultants who then seek to explain my CFS and bowel problems with it being depression and the crippiling nausea as anxiety and I get to embarrass them by being able to date my MH issues to a specific day when I was raped. I'd been perfectly fine until then, but being doubted by everyone over that including police and doctors helped triggered an eight year long breakdown.

    But I know have a therapist who believes completely I'm ill and has been trying to convince me too. It's much harder than I expected to admit I'm chronically ill and will be forever. Everytime I think about it I start crying and I never cry. I hated being doubted, but it gave me something to focus on apart from how crappy being ill is. I sort of miss it, but am sure than weird burst of Stockholm Syndrome will pass soon enough...

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    1. Hi.

      Anxiety, bowel problems, nausea and fatigue. Please try and get some pituitary testing done. I've just been diagnosed after being ill since I was fifteen, gradually getting worse. I'm 42 and the last fourteen years of my life have been spent battling for an explanation which I now have, at long last.

      I have asked Sue if I could link to a post on my own blog from this one but I suspect she is too poorly to reply just now. So I won't do that but would urge you to get the possibility of pituitary disease checked out, especially if your weight is dropping or increasing without dietary changes.

      Take care.

      Delete
  28. I still remember being only just able to resist punching the Aussie consultant in the face when he told me the pain, repeat kidney infections and nausea and vomiting I'd been suffering for two years were "a result of being a woman". And the next consultant who just shrugged his shoulders when I asked him to tell me what was wrong with me.

    But bless my GP - who, because he knew me from my profession and had seen me go downhill over the last 5 years - for sticking with me and contacting a urologist friend of his who diagnosed me over the phone and on the basis of existing test results and x-rays, this time correctly: I have two deformed kidneys. I was born with them, but it took 36 years for the problems to get bad enough to become disabling. At least now I know part of my problems are due to an accident of birth.

    Sue, your consultant needs to get his views out into the mainstream of teaching!

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  29. I like the idea of a Doctor that doesnt just come in look at the chart and dismissess you. I am not a malingerer, i hate being ill, i dont have the time or patience to be ill. I hate taking meds that just relieve the pain when nothing is done about the problem that is causing the pain.
    Most of all i hate reading reports that start along the lines of 'this slightly overweight woman' or this overweight/obese young lady... as though being the perfect height to weight ratio will cure all known ills.
    I know some things can be affected by weight issues, but sometimes the weight issuses are caused by the root cause of the illness or the meds they are giving you to treat the symptoms.
    I wish i had met a Doctor that is so asstute.
    I hope you are getting better and that they have an idea as to what is troubling you this time.
    Doctors are not Gods, some just think they are.

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    1. Well written, I am in 100% agreement with you!

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  30. Thanks for this. I'm a 1st year med student (not on wards for another year or so) and i hadn't even thought about this sort of thing yet. It frustrates me that there are people like your other doctors.

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    1. Just because you posted here, I'm fairly certain you'll be an AWESOME Dr. Good luck and perhaps I might ask you to never forget the wise words of my consultant?

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  31. Some Simon Wessely 'all in the mind' quotes were collected here:

    http://forums.phoenixrising.me/showthread.php?15500-Simon-Wessely-and-quot-all-in-the-mind-quot

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    1. I'm sure it won't surprise any of you to learn that Wessely had something to do with the misdiagnosis of one of the examples I give in today's post.

      Delete
    2. How that man sleeps at night I don't know. I have M.E and EDS and so he terrifies me. I can't believe anyone pays him any attention.

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  32. I've been disabled since I was born and my family and I quickly learned that the best doctors were the ones who would ask our names, give us theirs and treated us like people.

    The brilliant doctors (of many fields) who considered the emotional and mental impact of medicalisation upon my development "Take a year out of surgery if you can" being the best piece of advice after I was developmentally delayed by medical trauma as a small child. Or the ones who understood "NO!" when I withdrew my consent as a child for procedures even if it could have been forced onto me. My parents insisted on me being involved in the discussion about the content of and me signing all my surgery consent forms from the age of 10 or so (and I definitely withdrew consent at least once before that) before they would put their signatures to it.

    These days I don't make time if I can help it for a doc who isn't going to talk to me like an adult and make an attempt to get my level. I'm lucky in that my latest GP is excellent and was willing to say "I'm not sure, let me check some notes from some recent training" about one ongoing illness issue and that I am taken seriously.

    And I'm one of the lucky ones in that I have some very obvious physical disabilities which I know more about than most doctors (I can even spell pollicisation) and the issues that no one can see (or prove in testing cos I have obscure impairment clash which also blocks the most successful treatment option) were still taken seriously even if it took years of seeing different specialists and me eventually piecing the pieces together to work out an answer which works for me.

    I think considering us as people first is vital, the medical stuff is secondary to them working out our names, who we are, where we've come from and indeed those visual non medical cues that your ace doc pointed out! And of course being aware that those of us with atypical things have lived experiences which may not fit the "textbook".

    In fact the rubbish medics I had were always the ones who said "But the textbook says" which is why I had several instances of procedure X and procedure Y (as a relatively small child) until my parents stopped agreeing to surgery and waited till we had better doctors and I was bigger. It was always the docs who said "OK textbook surgery isn't working, I'm going to a conference in 3 months, may I take your notes and ask around for ideas?" who came up with more successful solutions. The ones who thought and asked first, sliced later!

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  33. How dare you not conform to their textbooks. My son was exactly the same when he was born. He had some of the typical characteristics of Cerebral Palsy (although it was a while before these showed themselves) but in other ways he had a whole host of experts baffled. An E.E.G. for instance gave a reading they had never seen before.
    You would think that things like this would remind them that we have still got a lot to learn but in too many cases it doesn't. My son kept very little of his milk down, even after being fitted with a nasal tube (and later, with a gastrostomy tube which he still has nearly twenty years later). All sorts of tests were done of course and different milks were tried including a pre-digested one which was as disgusting as it sounds. This was a long process, years, and all through this we kept hearing the words "he shouldn't be bringing his food back" and "there's no reason for his vomiting" (note that they say "there's no reason for his vomiting" rather than "we can't find a reason for his vomiting"). This of course translated into suspicion of us.
    There are a lot of good people in the NHS, I have no problems with the current professionals in my son's life, but when you take certain people too far from their comfort zone they don't like it and that brings real difficulties to you and your loved ones.

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  34. My friend had a terrible rash on her legs for years - awful, embarrassed to go out -
    GP said, oh just a touch of eczema.

    Then she got loads of symptoms of anxiety & sweating etc
    GP said, see it's just anxiety causing the eczema.

    Then she got terrible acute pain.
    GP said oh, probably just PMT, stop stressing about it.

    She went back in agony...
    GP said, oh it may be appendicitis - better go and get it checked just in case.

    Hospital discovered it was a massive ovarian cyst - she had to have emergency surgery and lost her ovary as well.

    While she was in there, a nurse said to her -
    Have you always had such a swollen neck? I think I'd better get someone to look at that...

    Turned out she had serious hyperthyroidism - which causes...

    Yes, you guessed it - Anxiety and sweating etc.

    When she started medication the "eczema" disappeared - all thyroid related.

    BUT - it had been left so long that she didn't respond to medication and then had to have radioactive treatment to kill off the thyroid and now has to take medication for the rest of her life to replace all the hormones her dead thyroid can no longer produce.

    They all need regular retraining and a course in how to LISTEN to their patients. They also need to take meds for ARROGANCE, LAZINESS and PRESUMPTION.

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  35. Words fail me. They just fail me.

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  36. I have noticed this trend over the last several years.

    There is an absolute epidemic of "it's all in your head disease"

    Also known as "If I don't know what it is, it doesn't exist and I can't be arsed to look it up disease"

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  37. I can give so many stories, my son's diabetes that was my 'anxiety' but was found in time, my lovely Auntie Barbara lost so young with 'middle aged spread' that was inoperable cancer, Mum's 'indigestion' that was the precursor to a heart attack and most heartbreaking of all a little sister of my son's schoolfriend who's tummy upset was fatal diabetic coma. Yes it is in the head because the brain controls the body and isn't separate, and after a chronically sick person's journey through the NHS they ARE psychologically harmed. My first experience of this was aged 9 being called a 'little liar'. Hospitals make me panic. Last year my uncle got none of the prescribed stroke therapy they just dehydrated him and shouted at me when I gave him water.I treat myself at home now.

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  38. by the way, writing that was really traumatic, my 9 year old lying was appendicitis aand I had an operation- without pain relief. Doing that to a child and telling her not to be such a baby is sadistic.

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  39. This is my life. All in my head. I've had debilitating joint pains since I was 19, horrible fatigue, skin rashes, loss of appetite...my ANA is constantly positive. My knees creak audibly when I move. But my inflammatory markers are normal. Therefore, the pain can't be that bad. Go home, the rheumatologist says, take ibruprofen, we'll see you again in a year.

    Makes me want to cry.

    Feel better, Sue. I'd send you some of my spare energy if I could.

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    1. Have you looked up Fibromyalgia Crunchyblanket? Mine presented with joint pains and fatigue first. A list of symptoms is here: http://www.fms-help.com/signs.htm

      Delete
    2. A lot of that sounds very familiar to me. Interesting - I'll bring it up at my next appointment. Thanks for the link, I appreciate it :)

      Delete
    3. And Ehlers Danlos Syndrome! (Just in case - the skin and appetite thing made me think of it.) Decent hospital based physios can be the best people to ask to get referred to for managing this kind of thing at first, rather than rheumatologists, who seem only interested in arthritis. Even if a consultant says they can't find a cause, you can still ask your GP for a referral to physio or pain clinic to help with managing your life.

      Delete
  40. It almost seems that good doctors have to be slightly renegade docs...who don't listen to the hyperbole of patients mainly being scroungers and hypochondriacs...I have met some like that and some who treat me as if I am a piece of meat that doesn't know it's own minds too...

    erm just the one mind that can sometimes be in two but not in a way that could mean I am actually ill in that area too really...honest ;o)

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  41. "Dismissive Personality Disorder" is a mental health condition were the majority of sufferers are healthcare professionals such as doctors, nurses, therapists as well as government professionals and their partner companies' employees such as current ministers of Health and ATOS employees. First signs of this illness occurs while the subject receives state indoctrination at an educational institute such as a university or a specialist school, or attending a specific short term course / seminar in order to be able to make assessments for the DWP. During that time the subject is in the early onset stages of the development of the Dismissive Personality Disorder, were the two major symptoms occur:
    1) An inadequancy to explain a medical condition that is not described in the contents of medical books written by the most prominent professors with the biggest incomes based on medical researches sponsored by the likes of Rothchilds or other big corporations with interests such as big pharmaceuticals who fail to provide a therapeutic medicine due to production costs exceeding the total profits.
    2) A denial of the presence of an unexplaned medical condition or the evident presence of serious pain and suffering of another patient in front of him
    When a case of a Dismissive Personality Disorder is severe, a delirium of constant repetition of set frases such as "it's all in your head" is impulsive and persistent. The "Dismissive Personality Disorder" is a psychosocioeconomic phenomenon, a condition created by a failed health care and health education system based on maintaining constant treatment of illness by upgrading/ switching medicines, and not provision of therapy and illness eradication. Nobody gets healthy - everyone is treated... Dismissive Personality Disorder is a disabling mental condition which alters the sufferer's personality to lose his humanity and compassionate abilities for ever, but still able to function in the society. Sad as it is ...there is hope. Although contemporary medicine has not found yet a treatment (the reason is most health professionals are secretly suffering from this condition too and they are in denial) recent studies show that the only treatment that seems to help in the recovery of a DPD sufferer is a good relationship with his patients. Having a good relationship based on mutual trust with known, long term patients, seems to improve the health of the really ill person who suffers from Dismissive Personality Disorder and during sessions/ conversing with them, his horizons are opening and his understanding of the human condition expands to the point he can see the error of his thoughts (due to his illness) and when this self-healing occurs, we can see not only improvement, but in some cases total eradication of the condition were the patient/ doctor is doubting no one no more, like the kind consultant Sue mentioned above.

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    1. Lol...excellent Zeitgeistgirl!
      I fear this disorder has reached epidemic proportions judging by the amount of posts Sue's blog has generated!

      Delete
    2. In my experience another MAJOR factor thst will cure this Professionals "Disease" is to suffer themselvs. Very GREAT CHANGES OCCUR THEN!!!!!!!

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  42. Thanks for this Sue.

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  43. Hi Sue, I hope you're getting some rest. So much of this is true for those that have FM and CSF/ME. I've just been looking at the Gov guidelines for Atos and Gov medical assessors, in relation to FM, ME/CFS. It seems this 'its all in your head' or down to wrong thinking is going hand in hand with it's a real disease or disorder... How does that make any sense? But apparently they can teach us to think our way out of pain... Mmmm We are drug seekers or lazy wanting to skive work... Mmmm so where does that leave those of us that continue to work making ourselves sicker... Well I'm sure that as the anger in us builds the truth will become clear, as people like yourself tell it like it is... Thank you for this insightful blog, and I hope it didn't cost you to much to do it... Dxxx

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  44. That's what IDS tells his constituents I've been told
    he goes round there house and says get to work or else
    He shocks them into getting better and if anyone complains he says you need to have your brain examined because you look alight to me

    I'm just glad i dont live near him

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    1. went to see the senior GP and told him of my concern over my long term chronic depression - he said I didn't look depressed

      Delete
  45. Reading this post and the comments has been an emotional experience for me. I had the misfortune to become ill during the 6 months we were in the States in 1994 due to my husband's work. My husband's company agreed to pay for an orthopaedic consultation in which the consultant was dismissive of the pain in my back and knees. It was only when we returned to the UK that I was diagnosed with ankylosing spondylitis and treated - under rheumatology, not orthopaedics. Unfortunately, my late husband had a personality disorder and couldn't accept I was no longer the 'strong one' so had latched onto the dismissive message from the consultant in the States. He used this to tell me I was a fraud and not really ill, and his speciality, when he wanted to be particularly abusive, was to declare that he was going to contact the DWP and tell them to stop my DLA because there was nothing wrong with me. Although my husband died 6 years ago, I still struggle with the legacy of this abuse and assume medical professionals and others won't believe me.

    As time went on, my AS turned out to be particularly severe and I developed symptoms that are not typical of the condition. The situation is complicated by degenerative disease in my lumbar spine, which is osteoarthritis, a separate condition. The AS has also caused my ribcage to become stiff which means my breathing muscles are almost continually painful as they struggle to expand an increasingly rigid ribcage. This is possible but unusual in AS and rheumatologists find it hard to believe because I'm not completely bent over.

    I sometimes have severe breathing difficulties but even if I'm desperately ill I refuse to call an ambulance as the last time I was in A&E for this reason I had to call my GP and ask him to speak to the hospital doctor to explain why he'd sent me. Then later on another attempt was made to discharge me, this time without any home oxygen supply, and I had to fight to be admitted.

    I'm very fortunate that whatever dismissive treatment I get from hospital doctors my GP is very clear about what my problems are and what he believes to be the causes. But I still get nervous before hospital appointments as I'm conditioned to believe that my symptoms won't be taken seriously. Fortunately I have some close friends who see me at my illest and understand completely. I usually take one of them with me to appointments!

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  46. My husband has been ill for about 25 years,His story is similar,wrong diagnosis,it's in the head,etc.Horrendous procedures repeated unneccessarily,we've met some real saints and some medics who shouldn't be let near an animal let alone a human being.The best GP's we've ever met are the ones who said 'I'm not sure/don't know what this is but let me do some research and start from there'. We have a GP like that now but history has affected my hubby so badly that the thought of her leaving or us moving home horrifies him.The worst 'consultant' we ever met was head of the Pain Clinic,she drove my husband from good mental health to suicidal.The mere mention of the words 'Pain Gates'is enough to reduce him to quivering fear and me to murderous intent in defending this man who lives with chronic pain every day. Luckily our marvelous GP has also learnt and is careful about who she refers him to and has been known to give short shrift to fools!
    Most importantly,we have learnt we must take responsibility for our health and treatment.Research,ask questions,expect to be treated politely not as a number.Don't just accept a procedure if you know you've had it before and doesn't work,politely say no and why.If you can't get satisfaction ask to see a different GP/Specialist, we are becoming 'consumers' of healthcare now and should expect good customer service!
    Lastly,I never thought I'd say this but these days money and reputation/PR talks,if your issue is a result of foolish error,i.e wrong leg amputated!! then sue them.Not only will it help you to survive,(or your family,if they killed you!)but it will force 'them' to make changes,sack the Doc/surgeon. It will help or save the lives of those who come after you.All medical professionals now have malpractice insurance,it just wasn't done in the UK to do this but as a last resort then use it.
    We are very fortunate to have some marvellous medical people in this country lets not let the 'bad apples'ruin it.
    No,I haven't sued anyone as yet,by the way:)

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  47. For the record I've never been told i was a lazy bugger as i have always looked ill in a way the world can understand but that doesn't mean to say i haven't been hounded by the DWP over the years because i have and my whole life has been made much worse then it need have been because of them

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  48. Labour peer Lord Ashley, 89, dies

    he was a good man
    David Cameron says he done well for the disabled and will be sadly missed

    who's David Cameron kidding ?

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  49. David Cameron described Lord Ashley as a "tireless" campaigner for disabled people who had a huge impact not just through his charity work, and legislation, but also in changing attitudes.

    The prime minister said: "It takes characters like Jack, with his extraordinary tenacity, to push for that kind of positive change.

    In what way has Cameron and his government assisted the well-being of disabled people??? Cameron is a liar and a hypocrite and a miserable f***ing bast**d

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    1. [QUOTE]AnonymousApr 21, 2012 12:07 PM

      David Cameron described Lord Ashley as a "tireless" campaigner for disabled people who had a huge impact not just through his charity work, and legislation, but also in changing attitudes.

      The prime minister said: "It takes characters like Jack, with his extraordinary tenacity, to push for that kind of positive change.

      In what way has Cameron and his government assisted the well-being of disabled people??? Cameron is a liar and a hypocrite and a miserable f***ing bast**d[/QUOTE]
      As i have said many times before and I've known many conservative politicians in my time and i have yet to meet one with a kind word to say about the sick and disabled not once
      i grew up in a conservative area and have only ever known conservatism i through it stank as a kid and 55 years later nothings changed it still stinks and always will do why? because that's the selfish way the country and the world has gone

      Delete
  50. Thank God you have a Doctor like this, there cannot be many like him in our world. After more than twenty years seeking a diagnosis - atypical MS was the closest - I am still no nearer to a real solution and now have to try and get by on the pain killers that the pain clinic limited because I refused to accept the "all in the head" diagnosis and insisted on asking whether the doctor had ever experienced severe pain. He hadn't which made his assumptions about how easy it would be to dismiss my own pain with the right attitude too much for me to take. I hope your doctor can spread the word so that our children or theirs can be treated with the dignity and respect that is their right. It may be too late for use but not too late for them.
    It is good to hear that you are feeling even just a tad better. I hope it continues.

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  51. My sister-in-law was diagnosed with IBS. After several months they decided it was actually bowel cancer. She died 5 weeks later.

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  52. I had to comment about this, as it is a subject very close to my heart. I too am one of those all in your head types, severaly disabled yet offered no help or support. After years of tests and seeing people your consultant will have a break down one day shout and you bully you, tell you its all in your head those be able to wash his hands off you once and for all.

    But its not just the fact that you feel a total failer, and that you have to live with the fact you are so ill and in so much pain and its all your fault, but like everyone else says you are so scared that ever other physical pain you have isnt real you don't go to A and E till your practically dead and then you have to explain why you are so disabled and watch their attitude change when you try and explain.

    Not to mention the resulting fracter of family and friends relationships because people cant cope or you cant bring your self to tell them. And then on top of every rubbish pain and life sucking days we have to put up with, when a new DWP form lands on our mat we KNOW that its going be million times harder to get the help, after all its hard enough for those we are "really ill". The worse thing is that when your in that hosptial room and your world comes crushing down, no one ever tells you that your not the only person in the world it happens too. You feel like you are the freak of nature not the doctors last ace to play card.

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  53. Good Lord. I am glad you have a good doctor - I know how much difference that makes. But those stories - the phrase that kept running through my head was "crimes against humanity." How do we stop this?

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    1. Mary, we don't all have your strong personality, but we must stand up to this abuse in our own ways. We must hit back, and hard, so that the doctors go away doubting themselves rather than us letting ourselves feel whipped. We might even gain some respect if we stop letting them do this to us.

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    2. Marty - is that the advice you would give a wife abused by her husband? An elderly person abused by his or her caregiver? Individuals can try to stop abuse, but it is often not enough to stop it. Many abusers get worse when challenged, and many of the abused are far too weak to fight back. When I said, "how do we stop this?" I meant, how, as a society, do we stop this? because it is only when we come together as a community that we will have the strength to stop the abuse.

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    3. Mary, I agree. When I have tried to 'fight back' they just close ranks or put you down as a 'difficult patient' and make life as difficult as they can for you. I am being gradually forced out of my surgery because I dared to speak out and question my GP's treatment of me.

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  54. It is all in my head. But It is a wiring issue, rather than wonky thinking or Brain chemicals. I am almost certainly Autistic, Everyone I know who know even the remotest thing about Autism just takes it as read that I am.
    On many Occasions I've had professionals declare the my meltdowns due sensory and emotional overload were signs of psychosis.
    I have depression now because of years of trying to be normal when I am not, and being told I'm just being awkward, and trying to understand a world I cant comprehend in the same way as everyone else.
    I scratch, hit and generally hurt myself as a way to deal with the overload and confusion that life causes me.
    The psychologist tells me I'm not trying hard enough when I lose the ability to speak because I'm trying so hard I have a meltdown. I'm told about the wonky thought patterns that I supposedly have. I am over-ruled and told I am wrong when I try to use my limited skill at explaining emotions to explain what is going on in my brain and how I see things.
    It *is* all in my head. In the unusual wiring of my brain. But still I am told I can't possibly know myself better than someone who has met me half a dozen times.
    They can't even do it right when it IS all in your head.

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    1. So many traumatic stories here, But I find your's particularly upsetting.

      You write very well and I could feel for myself the horror of being told it's the wrong kind of "all in your head". For people to spend years telling you you're mentally ill, when actually, you have all these stimuli and feelings you can't cope with and no-one to help you cope with them.

      I pray with all my heart that you find an advocate. Someone calm who listens to you and finds a way through with you. xxxxxxx

      Delete
  55. Hi,
    I am a final year student nurse and I can only promise to try my hardest not to end up like these professionals.
    I have had health problems myself and had professionals (and friends and family dismiss them) so I know how crap it feels. To feel ill all the time and not know why.
    When I was 15 I started getting migraines. When I was 16 I gave up and went to the doctors, I told them I had read about food intolerances and thought that maybe I had one and could they help. 1 year later I had failed my first year of A-levels partly because I had hallucinated on anti-depressants and fallen asleep on hundreds of buses due to my low blood pressure plus beta-blockers.
    I quit going to the doctors for 2 years.
    I tried to figure it out on my own and thought it was wheat I was intolerant to, I had fewer migraines but started getting really bad acid reflux, I could only eat 1 small meal a day without being sick and lost a lot of weight. I was tested 100 ways for a stomach ulcer and every new doctor repeated the same tests, no ulcer just intolerance. It took me 6 years before a consultant finally said "dunno some kind of food allergy or intolerance, looks like it probably is gluten". I still face that disbelieving look from people who think I don't eat gluten for some bizarre reason (not because it makes me ill) but I now understand the importance of a diagnosis and how rubbish it feels to be doubted.
    Next hurdle is adult onset asthma, according to my aunt it is just a bad cough (that has been getting worse for 3 years)...

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    1. You have actually been tested for coeliac's I hope?

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  56. I had ibs for many years according to the doctors. Then one day I collapsed, a locum noticed I looked anemic and my breathing wasn't good. Send me to hospital for an xray and blood test. The same day hospital rang that I was walking around with a blood level of 5.6 (normal is 12/13). Well further tests to reveal why I was severely anemic found that I had a tumor in my colon. I was diagnosed with stage 3 colon cancer, with 10/11 lymph nodes infected at the grand old age of 32. Sue I'm so glad your consultant is on the ball, your very lucky not everyone is. But those of us who have been through hell and back (or still suffering) know that we have to be our own advocates and push for things, otherwise we will never get them otherwise, and some of us will be in the hands of doctors who couldn't care less. sonia (from facebook)

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  57. My heart goes out to you Sue, I think I have pain, but nothing like yours, great article, I'm near to tears (honestly).

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  58. I won't add my stories of a lost life due to M.E. in the US, but I am very thankful that we have the internet now and can learn how common doctor abuse is. What do we do about it? I kept quiet for most of these years, but that only let them get away with it. So now I calmly expect to be dismissed, and rationally throw the diagnosis right back at them, letting them know in no uncertain terms that I reject their dismissal and have the opinion that it is THEY who are suffering from "I don't know what it is so it must be in your head" syndrome. I believe we must fight back (not emotionally or it would confirm their disbelief) and challenge them - at which they are shocked! They want to be adored, so accusing them of not being able to do their job is really upsetting to them. Let's be strong and discuss the facts with them and not let them just walk over us. They can at least learn to be more careful with their words. And let's leave them doubting THEMSELVES. I tried it and it feels really good.

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  59. In a rare moment, I “feel” a grand entrance, as the essence of grace enters my life – amidst the cares in time… Because someone, somewhere or something has reminded me: “That I am not alone”.

    As ill-health, and the feelings of being overwhelmed by pain, fatigue, and inadequacy reach fever-pitch – I drop to my knees, broken, and surrendered to the presence of grace, for a brief… timeless… moment.

    Tears fall… as the heart softly unfastens, and opens into a safe residence that just appears from nowhere. A sacred residence for my vulnerability and pain – that for a fleeting moment holds all my sorrows in the bosom of this compassionate silence.

    In this vulnerability, and in this silence, we find ourselves “complete” – and that we haven’t really gone too far to get here, but have actually travelled further today than most days, if not weeks, months or years…

    We try our very best to be in this world, and to be accepted for who we are, or have become – but when we have suffered enough inside, and can’t take one more step: please know there is a quiet, safe and sacred space waiting to be found, waiting to be known. When we release our tears that need to be let go of, that in turn begins to unshackle us from this world built on foundations of suffering, to glimpse another…

    In this seeing and through our tears we truly recognise by our experience that there is another dimension, the dimension of grace – and in this grace who “I am” and who “We are”, are just the same.

    Today, I will remember where I have been – and I will take it with me on this journey through, “The desert of the real” (as Jean Baudrillard once said). I recall the words a “good man” who was condemned for speaking the truth, once saying: “To be in the world, but not of the world”.

    It is always a rare treat to read your writings Sue – someone, somewhere, sometime…

    Kind wishes
    Brian ;0)

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  60. When I was a nurse I observed that Some doctors do stereotype people .......the group of patients least likely to be believed are overweight, middle-aged females. In my opinion Many Doctors and nurses are also prejudiced against those with mental illness or confusion. For some particularly intolerant and impatient doctors I noticed that there default opinion was that most patients were time wasters.

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  61. Yep everything I have experienced of the NHS, DWP, ATOS, DLA in different counties across the UK, echo's of exactly what you describe, from GPs and sometimes their receptionists, often consultants. From emergency through to wards.

    It always leaves you feeling like you're a lieing cheating scumbag, that is so thick, they don't even have to cover their obvious contempt for you.

    Great, isn't it.

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  62. Sue, you really have my sympathy, and now, my understanding! A few months ago, I went to my GP because I have continous pain from rheumatoid arthritis, and in the past, I have had positive blood tests for rheumatoid factors. I have also been suffering unexplained weight loss and one or two other problems, including an attack of vertigo caused afaik by a sinus infection (I am prone to them thanks to bl**dy privet outside that the landlord won't get rid of).
    However, as I am a smoker, she went off on a huge tangent, sent me to neurology where the "expert" there diagnosed my unrelated episode of vertigo as a TIA, and put me on blood thinners and statins.
    I've been taking them for 3 months, and I feel seriously ill - great!
    I have an appointment tomorrow at which I intend to beg my GP for the painkillers I wanted in the first place, and a referral not to neurology but to rheumatology. I intend telling her I have stopped smoking, in the hope that she'll take ne seriously. The worst thing is that I have subsequently learned that all my symptoms, weight loss, fatigue etc can be caused by RA! Misdiagnosis sucks. It all seems to be because health professionals in New Zealand are completely obsessed with smoking, and because once years ago, a GP at the practice got a negative result on a test for rheumatoid factors and so decided that my problem is just poor posture!
    Vicky

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  63. You only have to google the stories of Lynn Gilderdale of Sophia Mirza to see how bad this problem can get.

    I have always experienced being told my symptoms were in my head, made up, mental illness. I have EDS and M.E. What has really shocked me over the last few months is learning how many other people have been through this. I knew those with invisible illnesses had. I had NO IDEA that people with easily diagnosed conditions, like Chrohns, cancer, arthritis, broken bones, had also experienced these horrors. It makes my blood boil and I am so thankful that there is now this blog where all these stories are now starting to be told. We have to shout out, collectively, until someone bloody listens.

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  64. I have posted comments as Anon on a few occasions now, I am the "Anon" who apologised on my behalf of my profession (nursing) at the appalling treatment both you and your husband received at Addenbrookes. Sue I can relate, completely. Even as a health care professional myself, I have been on the receiving end of it's "all in your head" opinion for a long long time now, which still continues to this day. For nearly 2 years I complained of palpitations, chest pain and dizziness whilst on duty( A&E) I regularly presented as a patient, and was told I work working too hard, it was stress related, and needed counselling, of course I knew otherwise. I carried on working for as long as I could manage, sometimes scurrying off to the staff loo, to have a squirt of angina spray, water etc etc. And the bollockings I received for disappearing became more regular. I remember heading into work for a night duty, by the time I arrived into the dept, I was very short of breath, soaking, and extremely pale. I was admitted into Resus, where I was diagnosed with pneumonia and exacerbation of asthma. I was in hospital for 8 days. After recovering from this episode, I returned to work, only for the palpitations to return, at which point, I knew there was something far more serious going on, but kept very quiet. Until I passed out at work, had a few weeks off and in that time was diagnosed with congenital heart valve disease where one of the valves was leaking, a whopping great big heart, and dilating aorta. I of course was mortified, and found it very difficult to get my "all in my head" around. I did return to work again, As I just felt I needed to work, I could manage. Then I just became sicker and sicker, always taking time off, I began to be seen as overly anxious and generally a pain in the arse to work with, I physically could not keep up with the patient work load, was always pale and sweaty. One more emergency admission to resus was needed, when I was diagnosed with fast atrial fibrillation, for me to finally cave in and accept that some of my colleagues had let me down badly, not only me, but many many other patients as well. I did leave my post due to incapacity, which left me bereft for a job I absolutely adored. I am now waiting for cardiac surgery to replace a couple of valves and aortic root. I manage my symptoms at home, I have all the drugs I need in an emergency on stand by. The same drugs they would use in resus. I try and stay out of A&E as a patient as much as I can, 9 times out of 10. I am aware though, and this terrifies me, that there may be a time, probably when I've become way too dismissive and independent, that I may experience a life threatening episode and need to dial 999. I have developed a phobia of my old work place now, which is bizarre to say the least. They do say nurses make the worst patients, worst patients ? What the absolute feck ? Excuse my French. There is a very thin line between being nursed, and being a nurse, between being okay and not okay. There are no worst patients in my book. I have looked after a senior hospital consultant following an RTA, who in an instant became frightened, vulnerable, in fact somebody completely different. At any point in our lives we can become ill, or injured, and healthcare professionals have the utmost privilege to care for their patients, in a non judgmental, timely and compassionate manner. Doctors, swear by the Hippocratic Oath, nurses, The Professional Code of Conduct. I'm waffling and getting my ticker in a state. When I have had my surgery and recovered, I am going to return to nursing, and I tell you what, I will make sure I get my back arse onto every single available patient advocacy course out there.

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  65. Hi Folks I suffer with Bipolar Affective Disorder and had a letter from DWP in regards to my Income Support changing to ESA so i emailed ATOS Healthcare not telling them whom i was and i was shocked at the response i got so sent a fax to Mr David Cameron and other things i have overheard seemed distressing, read on and see what you think. By the way I have just faxed David Cameron all of the below and if any of you want to do the same the fax number is 020 7925 0918 I probably wont get a reply but lets see how hw gets on with this one.


    Dear Mr David Cameron,

    In response to your structure that incorporates ATOS HEALTHCARE whom I believe are supposed to be calling people up and trying to get them into work regardless of disabilities, I have heard terrible stories about ATOS HEALTHCARE so decided to approach them asking for information in regards to there doctors/Psychiatrists/Nurses Ect and never disclosed anything and the response i got was unbelievable I think you have not only employed a rogue agency but have embroiled yourself into a big and deep hole. This is what an insider told me.

    "Dear Mr Edwards

    Under the terms of our contract with the Department for Work and Pensions, our healthcare professionals do not need to hold specialist registration in any particular illness/disability.

    All our HCPs undergo training to enable them to provide informative and independent advice to the DWP about the effects a medical condition has upon a person’s functional capacity." (now does this or does this not go to show they have limited capability and should have no power over claims)

    Regards"

    For the sake of embarrasment i shall not mention the persons name, what must David Cameron think about this"

    Also get aload of this as well ATOS HEALTHCARE:-

    Atos Heathcare does not make the decision. Atos assessors are not required to be familiar with disability healthcare prior to recruitment. Around 60% are doctors, and 40% are nurses or physiotherapists. Doctors receive 8 days of training in disability before being allowed to assess patients and nurses receive a 17 day training course accredited by the university of Derby"

    This just goes to show complete incompetence obvisouly all this information went to my LOCAL MP whom requested a copy and as of yet im unsure what will be done about it, but just remember Mr Cameron, people will remember you for this and there is no way you will get another term in parliament and laws can change as quick as they were made.

    I would be interested to see what response you can make about this especially as the other day i also read that employment as well was down and overhearing in a jobcentre that employment is actually on the increase and that what happens is so the Jobcentre gets rid of the waives and strays they pass them on to the recruiment firm called Remploy whom take them from Jobcentre plus and offer them jobs to find out that so far down the line the company that takes them on do not neccesarily take them on and then its back in line to the benefits office to claim Jobseekers Allowance and that was a private conversation I overheard and will not state which Jobcentre it come from, however I have a mental illness and am being treated and have had nothing but bad experiences with your wise ideas changing IS to ESA then next year DLA to PIP I think you will find that there are alot of people whom are unhappy at the way you run your government at the moment.

    I look forward to your response Mr Edwards (Lets see what happens now)

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  66. with a government like we have you will never stop the abuse it will only get worse

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  67. A very good article Sue... but ooh after listening to the doctors observations (eg non fictional books, own teacup) I'll have to change my image as last time in hospital i had mickey mouse pj's a fairy colouring book(given to me by my grand daughter) and the little book of spells...god knows what the doctors thought of me .

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  68. I went to A&E a couple of months ago as I was having trouble breathing (so weak and dizzy I couldn't actually stand worth a damn). I'm a 20 a day smoker and my blood O2 levels are usually around 98-99% which is good apparently. When the ambulance turned up they measured my levels at 95%, by the time I got to triage 15 minutes later they were at 92% and by the time I actually got seen (2 HOURS later) they'd gone down to 86% (below 90% is technically hypoxia but 86 is not usually too much to worry about... in a normal smoker). I got told I should expect lower levels as a smoker, I told them every test I'd ever done had never measured me lower than 97% while awake. They asked me what meds I was on I said citalopram and they instantly said it was a panic attack I said I was well aware of what my panic attacks entailed and shortness of breath for over 2 hours was not part of them and I'd had precisely no trigger for it. this went back and forth for a bit me wheezing away feeling like an iron band around my chest (I don't have Asthma either) struggling to breath. Then they said for the last time that there was nothing wrong with me called security and had them 'escort' me from the hospital at 2am.

    I still have no idea what happened to me that night but it did eventually stop thankfully. All I know is they saw smoker on anti-depressants and instantly lost all interest in finding out what was happening.

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  69. Thank you, thank you thank you millions of times for this post. I am fed up with doctors, with treatments and diagnostics. NO MORE as for them, it's all in my head, and my pain and suffering is "nothing" just illusions coming from depression. It's OVER. I prefer to die rather than being bullied by doctors

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  70. There has been so little research on what I think of as psychological iatrogenesis - i.e the harm cause by the way we are 'treated' be health professionals.

    I do think that very real harm is caised by disbelief - it confudles ones identity at the very least and can lead to significant psychological harm as well as real physical harm if it prevents people feeling that they can seek the medical help they need.

    The only studies I have been able to findabout this are about chronic pain but it applies to so much more.

    This study: http://www.nursingtimes.net/nursing-practice-clinical-research/the-effects-of-failing-to-believe-patients-experience-of-chronic-pain/807281.article mentions some of the issues.

    Personally I feel that disbelief has caused me great psychological ans well as physical harm.

    Thank you for highlighting it. Doctors and nurses should be ashamed of themselves when they do this to people.

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  71. oh, your post is so nice. I like your post so much. Recently I search a raybanoakleysunglasshop selling sunglassess. The price is cheap than others.

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  72. To the anon who kindly put up the URL of the failing to believe experience of chronic pain study: unfortunately the page is not available. Do you have any more details about that study at all? Thank you :)

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  73. I'm going to share a letter I was forced to write to my GP, and ask to be put into both my GP and Hospital notes, which is I hope self-explanatory. Yes I am a middle-aged woman. Yes i think this is a typical experience nowadays :( :

    "Dear Dr A-,

    I have received the letter that Dr D- wrote to you following my appointment with him.

    I am rather dismayed at Dr D-’s misapprehension about my state of mobility. I had to explain to him 3 or 4 times during my consultation with him that I am NOT immobile or inactive, my feet are NOT in a state of ’dis-use’, and that I have never stopped brisk walking with my dog for an hour every day. Indeed, following my two operations in September 2010 and May 2011, I mobilised very quickly in the immediate hours following both operations, and was back walking the dog within three days post-operatively on both occasions. Yet he has still written as if my problem is related to ‘dis-use’, as if I no longer exercise my dog (his use of the term ’in the past’ demonstrating this), and that I need encouraging to exercise, as if I was currently inactive and had been for some time, none of which is an accurate appraisal of the history I gave him.

    For clarification, I would like it placed on record that I walk my dog for an hour a day, have done for many years, and am a full-time carer, all of which mean I have a necessarily highly active lifestyle. If really necessary - though I am presuming, hopefully, there is really no need for such - I do have many witnesses who can attest to my dog-walking schedule. I did, however, to my sorrow, have to stop playing Badminton (as I explained to Dr D-) some years ago because of the problems I have with my knees, elbows and hands.

    In the circumstances, I must insist that this letter be kept in my notes in order to correct Dr D-’s or anyone else’s misunderstanding about the extent of my mobility, as I believe this misapprehension could potentially lead to wrongful trivialisation of my current health problems, due to an over-focus on my obesity, an incorrect assumption I am inactive, and a misguided tendency to incorrectly dismiss health problems as being consequential to that. I am extremely concerned to prevent that, and seeing the extent of Dr D-’s misapprehension on this issue has made me convinced this needs to be ensured.

    The reason that this issue is important is because, while I have never stopped mobilising (apart from the two days following surgery and the only two days after the episode in September - ... in the park with the dog - that brought on sudden pain and intense difficulty in walking and necessitated the house call from yourself) it has become more difficult for me to mobilise. This means I am using painkillers every day, yet remain in a lot of sometimes distressing pain, even while remaining active. I asked for a medical consultation in order to help me maintain my usual, necessarily active lifestyle without being in pain. Far from reducing any swelling of my feet, my condition appears exacerbated by my active lifestyle. I am concerned this impairment may increase, and also that a false assumption that I am an over-eater and inactive will prejudice my chances of having any serious health problems taken seriously following this episode. I was, for example, informed of a number of possible post-operative complications by doctors when I consented to my gynaecological surgery. While I am not wildly attributing my current problems to the surgery, it is always possible that a problem such as this has occurred, so it is important that all doctors involved with my care are not in danger of misdiagnosing because of the above errors I have highlighted.

    I will therefore also be sending a copy of this letter to W- hospital, requesting this is put into my hospital notes."

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  74. i can sympathize with you so much. It's like the validity of your whole life is being questioned, again and again and again.

    It's hard. And I don't know how to cope with it. When the same attitude comes from your parents, it makes things even more complicated.

    Glad to know I'm not alone,
    Abigail Cashelle

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  75. Sue this made me cry. Anyone got any suggestions on how a version of this could be got into the BMJ or something similar? Even the best doctors need to be reminded of the lasting damage they can inflict when they won't admit they don't know.

    What saved me (as well as having a much less complex condition than Sue's) was marrying into a medical family. I slowly learned to act on the following advice and thought it might be useful to share:

    1. Never tell any doctor what you think your condition might be. They will probably get offended that you think they need help and will think of all the reasons why it couldn't be that.

    2. If you have good reason to steer a doctor down a particular diagnosis route, mention symptoms that will set off those bells in their mind. I have hypermobility issues and when I realised, I went to my GP and said, 'I seem to be quite floppy and badly coordinated, and as well as having lots of pain my joints seem ...ooh I don't know... flexible compared to other people?'

    3. Be very specific about symptoms and make it clear how much they affect your life. The doctor will mentally dial down everything you say. Don't use understatement and give examples of what's difficult - things most people would have no problems with. Ask friends if you've forgotten what those are; '...is it considered normal not to be able to carry a small saucepan without pains all up your arm?'

    4. Doctors are often from backgrounds which mean they have been fit and healthy all their lives. It is hard for them to imagine suffering. Say things that are easy for a healthy person to picture if they've never experienced it, like; 'the pain is so bad that every week I end up lying in bed for a whole day unable to move even my eyeballs'. This means facing up to your difficulties and will be upsetting, so practice in advance.

    With this in mind, if you can possibly get to a key medical appointment on a bad day, do. Seeing you in a terrible state makes a big difference for the nicer doctors.

    Similarly, if you are asked to do something during the appointment that hurts, say so. 'Just hop up on that table there' - 'That's rather painful for me, is there any way we can adjust it?' Then be all grateful. Make them feel good about helping you.

    5. Always go in with at least one action you want the doctor to take, and don't leave the appointment without having got clear answers on next steps for it.

    If they say, 'you don't have X Syndrome', you say, 'fine, but can you refer me to someone that will help me manage my severe pain/difficulty in breathing/inability to swallow etc so that I can improve my quality of life?' or 'What strategies tend to work for people who experience symptoms of (x and y and z) which I have just described?' They won't want to admit they have no idea, which may spur them on to suggest something useful.
    At the end say 'so you're going to do x, y, and I need to do z?'

    6. Be very careful when you are asked questions about low mood/depression. If you are confident that depression is not at the root of your troubles, say something like 'I often feel unhappy, directly as a result of the worsened quality of my life due to x.'

    Of course these things only work with well intentioned doctors who have fallen into bad habits. Doctors should probably get regular counselling to help prevent them from developing hatred for people with chronic and complex conditions. When this happens it's too late. Why it happens I don't know, but it should be a recognised professional pitfall.

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  76. @ Angela Kennedy

    Sorry I got the URL wrong - here is the link to the article:

    http://www.nursingtimes.net/nursing-practice-clinical-research/the-effects-of-failing-to-believe-patients-experience-of-chronic-pain/807281.article

    Hopefully that works.

    I have ME and spinal problems - I almost ended up paralysed because of the job they had done on my head over the ME - I nearly eneded up parlaysed because the disbelief had made me distrust my own experience of my own body.

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    1. That's great! Thanks very much for this. Yes the doctors really do a number on you if you have an ME diagnosis.

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    2. Thing is they gave me the diagnosis - I had never heard of it... it was then confirmed by a neurolo

      Its not like I self-diagnosed.

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    3. As a student nurse, this was what we learnt and applied, just as the article says: McCaffery’s (1968) definition of pain – ‘Pain is whatever the experiencing person says it is, existing whenever the experiencing person says it does’
      The problem is with professionals who forget their training and fail to read current research. They wouldn't have lasted two seconds on my team!

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    4. Glad to hear it Mark.

      I can't find any research done on the harms caused by disbelief of other symptoms.

      I personally feel traumatised by the way I have been treated.

      Delete
    5. I like this quote:

      The Body in Pain by Elaine Scarry characterises it thus,



      “…the conclusion [is]that physicians do not trust (hence, hear) the human voice, that they in effect perceive the voice of the patient as an ‘unreliable narrator’ of bodily events, a voice that must be bypassed as quickly as possible so that they can get around and behind it to the physical events themselves. But if the only external sign of the felt experience of pain (for which there is no alteration in blood count, no shadow on the x-ray, no pattern on the CAT scan) is the patient’s verbal report (however itself in adequate), then to bypass the voice is to bypass the bodily event, to bypass the patient, to bypass the person in pain.”

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  77. Hi Sue - and everyone else who has posted their own experiences.

    I was sad but not at all surprised to read this yesterday. It was so thought-provoking that I wrote my own post on the subject. One of the things that really worries me is what happens to all the genuinely mentally ill people when the 'conveniently (for the doctors) crazy' people overwhelm the mental health support system. A lack of credence is bad not only for the person not being believed, but also for the people who lose out of getting help because so many physically ill people are being bounced to psychiatry by doctors who can't be bothered to do any more than skim the surface of what might be wrong with them.

    I've lost so much of my life to illness and it was all so unnecessary. I don't know whether to be glad that it is finally over or to mourn all I've lost. And then a chill goes through me when I read Sue saying that it doesn't end with diagnosis. And I should know that already - because I am still not receiving the treatment I should be.

    Sue, I do hope that you are hanging in there as best you can. I am, as you know, thinking of you. We don't really know each other but for one long telephone call and a few tweets, but it was so wonderful that day to talk to someone who understood. Thank you.

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    1. With Sue's permission, I am just posting a link to my own experiences of this sort of problem: http://wheniwasyou.wordpress.com/2012/04/24/all-in-my-head/.

      Delete
  78. I don't want to take away from Sue's stay in hospital and all the experiences that have been shared here but to some extent My Mum's care or lack of it in Hospital and the Nursing Home echo's what has been expressed here.

    You'll know that I mentioned how I was caring for my lovely Mum...sadly she passed away on Sunday morning to some extent though Mum was ill it was still a shock and a bit of a surprise at the suddeness, just at a point where I would have liked to get a Dr in just assure me that the care she was receiving was what it should be and Mum had started the procedure for passing away therefore nothing we would do could help bring her back or maybe something had been missed.

    Unfortunately our equivelent of NHS Direct said basically it was nothing to do with them but to approach a Dr on Monday(I was afraid that Mum would not survive until then...sadly she didn't)

    They have decided because Mum had not been seen by a Dr since January(She was in hospital in March)so a Dr would see her there?

    Mum has to have a Post Mortum and I cannot stop it happening so I had to identify Mum's body at 3pm today!

    I held Mum's hand through the night and kept telling her how much she meant to me.

    Sunday morning her breathing pattern changed. She stared into space and could not really respond but I believe she understood and was able to hear what I was saying.

    Perhaps around 8am I happened to say something, kissed Mum's forehead and then her lips. She responded and kissed me back and I have never felt such a strong kiss in my life and it must've taken all her strength but I guess she was giving me a farewell kiss and telling me how much she loved me.

    At least Mum is out of her suffering and pain and its a new life for me. It won't be easy.

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    1. I know it's a platitude, but I could not read your post without expressing my sorrow for your loss. I wish you the very best as you adapt to the changes that you are facing.

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  79. This has helped me so so so much. I am currently in hospital in the process of getting a diagnosis of crohn's after 10 years of symptoms. I stayed at home unable to walk unaided for weeks before being admitted because I didn't think A&E would take me seriously. It is amazing to know I am not on my own!

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  80. Anna of Hypercryptical alerted me to your post after my latest posting. Unfortunately, much money is wasted in churning out robots that do not even have the memory of robots. The Cockroach Catcher

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  81. Thank you Catherine,
    I think I have closure to some extent(after the funeral will be the most difficult part)sadly things were not as straight forward as I hoped and they wanted to do a Post Mortem(and I had to identify Mum's body)

    Then the pathologist had a car accident and it was put back another day.

    I have to accept the findings. I have given Mum a lovely delicate two piece to wear, I wish the shoes had been better but...and I have placed my last Mother's Day Card and a little bear in a carrier bag that says "I love You!" into the coffin with her. And I think I'll go the chapel of rest.

    I hate thinking of money but the meagre savings Mum had will probably make things difficult for me and though smaller properties are few, in time that may have to be an option and will have to move. I hate having to think of money. Its never been important but you need it to live. I try not to think too far ahead but thta's easier said than done.

    Thank you for kind thoughts.

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  82. Is it not time for the Crown Prosecution Service to “dust off” their rules on the common law offence of MISCONDUCT IN PUBLIC OFFICE which can carry life imprisonment. ( see: http://www.cps.gov.uk/legal/l_to_o/misconduct_in_public_office/ )
    According to the CPS the offence is committed when:
    a public officer acting as such
    wilfully neglects to perform his duty and/or wilfully misconducts himself
    to such a degree as to amount to an abuse of the public’s trust in the office holder
    without reasonable excuse or justification.
    A reminder of the penalties before each vote in Parliament – Lords or Commons – might shake the corruption out of the system.

    If it is felt this is a bit harsh then people should realise that the impact of the changes falls on those least able to protect themselves :
    1. The sick and disabled ( obviously)
    2. The poor
    3. The aged
    4. Carers – mainly women.

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  83. [QUOTE]Anonymous has left a new comment on the post "It's all in your Head":

    Is it not time for the Crown Prosecution Service to “dust off” their rules on the common law offence of MISCONDUCT IN PUBLIC OFFICE which can carry life imprisonment. ( see: http://www.cps.gov.uk/legal/l_to_o/misconduct_in_public_office/ )
    According to the CPS the offence is committed when:
    a public officer acting as such
    wilfully neglects to perform his duty and/or wilfully misconducts himself
    to such a degree as to amount to an abuse of the public’s trust in the office holder
    without reasonable excuse or justification.
    A reminder of the penalties before each vote in Parliament – Lords or Commons – might shake the corruption out of the system.

    If it is felt this is a bit harsh then people should realise that the impact of the changes falls on those least able to protect themselves :
    1. The sick and disabled ( obviously)
    2. The poor
    3. The aged
    4. Carers – mainly women.[/QUOTE]

    very true the main problem is getting a set of lawyers to implement it

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  84. I've been there more than once, first time at the age of 12 when I began to experience the most debilitated pain in my back. Spent a year being told that I had urine infections - three in 12 months and the last one diagnosed over the phone without even seeing me or talking to me directly - eventually I was told (or rather my Mother was told) that it was either I was making it up to get off school or I actually believed I was in pain but I wasn't it was all in my head making me believe I was actually in pain when not. The proof of this claim? I was too young to have back pain!

    It got so bad that I even began to doubt myself, I knew I wasn't lying about the pain I was experiencing I figure that a GP knew better and if he said I categorically couldn't have spinal problems/pain then he has to be right! Right?

    Luckily for me my Mother and two of my aunts didn't believe him at all and said that they knew I was experiencing pain for several reason. One I wouldn't lie to simply get out of school. Two I was experiencing pain they could see if when these attacks came on. And Three, they doubted very much I had a psychological problem that was causing my supposed pain.

    So eventually they got me in to see my actual GP rather than this male partner who was basically writing me off as either a liar or crack-pot so to speak she talked to me and asked me questions and listened to my aunt explain the whole rigmarole they and I have had to weigh through over the previous year of continual GP visits.

    She said first, there was no thing as being too young to have back pain/problems and then she did a quick exam and told me that I had at least a curvature at the base of my spine that she could feel just be rubbing her thumb down my spinal column something that the other GP never did as I was never examined at any of the numerous appointments I had with him at all. She also diagnosed hammer toes and a calcium deficiency and referred to me the hospital specialist.

    One X-Ray later and my curvature was joint by two deformed and misplaced vertebrae in my prognosis.

    So definitely not 'all in my head' was it?!!!

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  85. In 1996 I got very ill - eventually, after many GP visits I was told I had ME. I was bedridden in a dark room for the next few years.That was after being told by a GP that I was being 'hysterical' when I cried because I felt so bad in such a terrible way that I couldn't describe it and she didn't seem to be able to grasp it - in fact I was terrified - it was not so muh that I felt so ill that I might die but that I was in the process of dying - not like a panic attack but that my brain was shutting down.

    Another GP said 'well it's not like you are lolling around in the chair' when I told him I felt that I was going to pass out and that I was finding it hard to sit upright.

    I really feel that their faliue to take me seriously and believe me had a serious effect on what happened next.

    After months of trying to continue working and having to go home, dizzy, every muscle burning and throbbing and weakened from ordinary activity and it getting worse and worse a GP told me I probably had ME.

    I had no idea at the time what a terrible label that is to be given.

    I got worse and was bedridden in a dark room for years. I hurt all over, I vommited evey time I ate anything, I had room spinning vertigo 24/7, I had fevers, I couldn't sleep at all, my partner couldn't touch me because it was too painful.

    Despite all of this I was still not believed.

    I am a bit better now - I have lost my lover, my home and everythign I cared about and late this year I will be migrated from IB to ESA - yet more disbelief - to be honest I am not sure I will survive it.

    I am better than I was but I am still very unwell. I no longer have a partner or a secure home and I know that the new ESA medical will ramp up up the disblief again. I don't think most people understand what this this does to a person.

    I feel the 'it's all in your head' thing will kill me in the end because it will mean I end up benefitless and homeless and still very unwell.

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  86. Oh - continued from above post.

    One time when I was in hospital there was a 17 year old girl who had Chrone's - she was in agony. The staff were supposed to give her regular pethadine. They didn't.

    It was an orthopaedic ward - part from myself an her all of the other patients were very elderly women in for hip or knee surgery - mayny of them were suffering form quite advanced dementia. One was constantly screaming for her mother whilst she lay in a soiled nappy that stank - the nurses did nothing. Several of them couldn't feed themsleves and nurses would come in, put food in front of them and then take it away again saying 'oh you don't want it'. They were basically being starved. I saw a couple of nurses re-dislocate a very elderly woman's shoulder as they woman-handled her back into bed - they didn't tell anyone and she had to go back doen to surgery to have it sorted the next day.

    Anyway - the 17 year old Chrons patinet saw all this too and was rightly very distressed by it.

    She couldn't eat anything because of the pain and yet the nurses didn't seem to be able to grasp this - they kept trying to make her eat and nto giving her the necessary pain medication. Every time she ate she ended up shtting massive amonts of blood in excrutiting pain.

    Her parentas asked me to keep an eye on her as I was the only other youngish paitient on the ward. I tried to do that.

    In the end they removed large sections of her bowel and gave her a colostomy bag. They still didn't give her propper pain relief.

    Her mother wrote to me for the next year or so to let me know how she was getting on - it was not good.

    Chrons is a terrible illness and the fact that medical staff could not grasp the extent of the pain it causes is horrifying.

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  87. The best wat to deal with people who say it's all in your head is to ignore them
    however if they should persist then the next best way is to whack them hard around there head there'll soon get the message and back off believe me

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  88. [QUOTE]Chrons is a terrible illness and the fact that medical staff could not grasp the extent of the pain it causes is horrifying.[/QUOTE]

    out of all conditions i have ever seen in my life or experienced and i have had many i would say that the bowel and bladder are the by far the worst as for the simple reason in that they are continually working in which pain relief invariably will not work

    I say that as a long time sufferer myself with many aliments and in knowing many people with life long conditions of the bowel and bladder

    even a so called mild condition like piles can bring about so much pain that the person concerned kills themselves in the hospital

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  89. Wow Sue. so Brave of you to blog this. Its true, doctors do not listen, nurses do not listen, do not observe. My daughter aged 26 on dialysis. she had symptoms, her chest was increasing in girth, her blood pressure through the floor, chills and sweats. Doctors and nurses telling me that she would die if she did not start to take care of herself, if she did not abide by the diet and fluid restriction. Somewhere from the depths of almost not being she asked for a heart scan. She had a mass in her heart, she had an infection that had broken out under her breast. She was sent to Papworth, the surgeons gave her only 30% chance of surviving the op. she survived.

    Less then 4 years later - she started to lose weight, her stomach swelled up so she ended up looking like a 9 month pregnant woman. she was chronically malnourished, we could see all her bones, her breasts disappeared. She could not eat or drink because of the enlarged abdomen. She was waiting for heart valve surgery, her heart had been very badly damaged as a result of the 2007 incident, it was never the same again. She died on 5th September 2011 - They denied that she was that ill - she knew she was dying, but they refused to admit this, just because she was 30 they could not admit what she and we knew.

    Dani had been diagnosed before her 5th birthday - she knew her body - she knew what was happening within her, Doctors and nurses however think that they know better. Her doctors and nurses at Addenbrookes, were dishonest and negligent, and ultimately responsible for shortening Dani's life.

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    1. The responsibility for shortening Dani's life goes back to 2007.

      The fact that she has died is not what my complaint is about. I am continuing the questioning that she had started in the couple of months before her death. she wanted them to be open and honest with her so that she could make her arrangements and do the things she wanted to do before she died. She was not given the chance as she died before she was told that she was dying. No one had noticed her wasting muscles or so they said. But a few days after she died I was told by a member of staff that they had been discussing Dani and what was the best course of action to be taken to help her while she was so seriously ill. This member of staff had not realised that they were not to speak to me. Of course now it is denied that the conversation took place.

      Dani died how she would have wanted, suddenly, quickly and not in hospital. she died in the sunshine. she was a beautiful sunny person; rooms lit up when she entered them. I miss her.

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  90. There's another angle on this that I want to add. There is an old man who is close to me. He is what I think of as 'pre-war stiff upper lip'.

    Last year, he fell and went to A&E. He didn't call an ambulance, he got a taxi. They took a quick look, took an X-ray of his wrist and sent him home.

    I saw him the next day and asked to look at his arm. It was very obviously broken and I told him to go back to A&E, but he wouldn't. It took a week to persuade him to see his doctor.

    His doctor immediately sent out a community team to visit him every day at home, referred him to a mental health team (correctly diagnosing vascular dementia, which not everyone picks up on when the first symptoms are physical, in his case falling over) and got onto the hospital. It took the hospital another week to call him back in.

    The consultant in A&E made a desultory look at his elbow. I insisted despite her protestations that she should let me take his shirt off, telling her that his humerus was badly broken to the extent that it was bent and the shoulder subluxed. It got quite heated and I had to practically rip his shirt off.

    She took one look at the shoulder and agreed with me. X-rays showed that it was broken in three places.

    By then, it was too late to set it correctly and he had to have major surgery.

    I shan't go into details of his treatment in hospital, but the excellent work of the surgeon was largely undone by other doctors, nurses, physios and OT's who didn't want to make an effort to help a confused old man who didn't want to make a fuss.

    He now has very little use in that arm.

    It's bad enough when doctors don't listen to the more forceful, articulate amongst us, but they also have to go a step further and listen to the reserved, the polite, the 'don't want to be a bother, doctor' people.

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  92. Hello Sue,
    I love your blog. Regarding 'imagining' symptoms, listen to this: I was badly injured during a bungled appendix op in 2005, I woke up with brain and widespread neurological damage including double vision, the inside of my throat destroyed and the cartilage at the front broken (I could hardly swallow and it made a loud click and slushy noises - easy to hear), badly injured cervical spine and more. The unsupervised anaesthetists who caused these injuries 'diagnosed' a 'mental health problem' supported by the hospital. I kept telling doctors and GPs I was injured but they all refused to refer me for tests and accused me of having 'conspiracy theories' and 'paranoia' and tried hard to get me to go on antidepressants which I refused because interestingly their unwanted effects are similar to the symptoms I had and can cause neurological injury. One GP said, when I was yet again describing my injuries/symptoms and asking for help and he asked what I wanted I said 'I just want the truth' (and remedial care and 'sorry' would have been kind), he said 'there is no truth only points of view, I cannot verify your point of view' that's why the doctors all refused the tests because they would have easily verified my 'point of view' (knowledge). NHS Neurologist and Rheumatologist wrote reports full of lies and gross fabrications thereby preventing remedy and ECGs done by GPs were written up as normal when they actually showed a heart defect that had appeared after the op. I was sent to counsellors (they had been briefed by hospital that I was a nutter imagining I had injuries) and they subjected me to psychometric tests that did not address my symptoms at all, buried what I said about my physical injuries and wrote to my GP/docs that my symptoms 'could be psychological or could be neurological.' a very long story tens of doctors all backing each other up all saying 'everything normal' when they saw I was injured, systemic lies, denials and betrayal of my trust, longterm neglect and abuse by medical staff and counsellors. Went abroad and managed to get tests done (MRI/CT etc.) that proved I'd been telling the truth all along. Those of us who've been iatrogenically injured (caused by healthcare) are frequently given false mental health 'diagnoses' and are subjected to the extreme cruelty of being told 'it's all in your mind', because then we will be discredited, nobody will believe what we say and the negligent doctors get away with it. Some aren't strong enough or are too badly injured or have no money (or all these) and can't go abroad to get tests like I did and after a while, with no proof that they're telling the truth (evidence) they gradually lose their core of self-belief (doctors can cause this more quickly if they can get the person to take psychiatric drugs) and end up believing the false diagnosis of all the symptoms being 'purely psychological'. Just look at how often neurological injury/disease is 'diagnosed' as a psychiatric problem; memory problems, twitches, muscle loss, swallowing problems, visual symptoms, numb places, cognitive impairments and so on are neurologically caused. How dare doctors say otherwise? And how dare they say so many other illnesses/diseases (e.g. ME/CFS in the UK, compare NICE's recommendations with Canada's) are also 'just in their minds' when the info is out there that proves they are physical? It's political: happy pills costs far less than neurological tests/treatment and longterm care and services. To submit iatrogenically injured people to this cruelty on top of the injuries we have to live with is cruelty to the extreme, it feels like torture: being punished for having been injured in that way, by doctors; not our fault.

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  93. I'm so sorry, I forgot to write about YOU. I felt very emotional reading about your latest planned surgery and how much bowel you've got left and your awful symptoms and when I get emotional my brain (with brain injury) works even worse and I lost track of what I was writing and had wanted to say so I'll write it now, I hate being so useless! I had read some of your history and posts before but I can't find (or remember) seeing how it all started for you. I don't know much about your illness, have only read bits over the years, but I think doctors claim it's 'autoimmune' is that right? Since my bungled op I've read and learned so much medical (and legal!) stuff and now my ears prick up whenever I read 'doctors don't know what causes it' or 'caused by immune reaction/autoimmune but doctors don't know why' because very often this is rubbish: immune reactions (as I know you know) are caused by foreign substances/toxins, may be viruses/infections, environmental or pharmaceutical toxins. Now there's a MEGA cover-up (as I'm sure you know) on the adverse effects ('side effects') of pharmaceutical drugs. I have read lots of reports/info about various medical drugs causing 'autoimmune' (they say) when it is the drugs that caused it (and pesticdes etc. = neurotoxins) but doctors, colluding with harmaceuticals bury the known cause(s) and lie and say 'oh we don't know what caused this (auto)immune reaction. My question is this: do you think you were exposed to pharmaceutical toxins before your illness/disease, can you think, do you have a feeling about what started it all (and NO, not 'stress' as they like to pretend)? In other words, were you prescribed drugs of any kind, had any ops, vaccinations and so on before you got ill? I would be very interested to hear what yu think started it all. Also with all the ops you've had since you've been exposed to yet more toxins (and maybe infections?) to add to all your poor body's dealing with and can't even get all the nutrients from you food - I think? I truly feel for you and I admire your strength and humour. I too am a 'benefit scrounger': but the doctors wrote lies to the DWP (and Council) that I had nothing physically wrong and it was 'all in her mind' nonsense so I wasn't put on correct benefits and back then the DWP's medical assessment of me was a real farce, won't go into it now, I did a subject access request under the Data Protection Act for all DWP data on me and so much is 'missing' including this medical report. Do you think you've always had the best healthcare and good doctors? Do you think there might have been other (perhaps more appropriate) tests and treatment early on which might have meant you would not be in such a dire position now, in other words any negligence? I wish you all the very best and look forward to hearing more of your story and your fight.

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  94. Sue

    I've just read your blog for the first time and you are such an inspiration for those of us who are facing the merry-go-around of chronic pain, DWP red tape and medical "mis" and "un" diagnosis. On the one hand, your story and those of the other bloggers have uplifted my spirits to continue the battle but unfortunately it also highlights the systemic failure of the nhs's treatment of the chronically ill. I applaud the rare jewels of medical staff that some of us have found but unfortunately too many of their colleagues are too overworked, stressed and harassed to give us the insightful and professional treatment we deserve. They too are victims of being ground down under the weight of red-tape. That said the next time an overweight woman presents you with symptoms of extreme pain, please please do not tell her to go to weight watchers - try treating them medically instead of patronising them.

    Keep up the fight.

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  95. I was treated as a hysterical psychiatric patient who was just a hormonal teenager.

    I am a survivor of child abuse.

    I go to see my doctor with a fever, pneumonia, and rage, and since it came back with no bacteria or virus in the bloodwork, it was "all in my head"

    No science, no ruling out other causes like a genetic condition or parasites, just "all in my head" i'm "somatizing" because i want "attention"

    I'm fairly sure my rape left me with some kind of std in the spinal column. I lost the ability to walk for about 6 months and am only just getting it back recently.

    A psych diagnosis should be the LAST resort of a doctor, not something for them to stick to a patient at the first sign of emotional disturbance or illness they dont understand yet.

    A psych diagnosis stays with you forever, even if its not recorded... you are left with that doubt about your own abilities and it slows every decision you have to make. And once you no longer trust your own judgement nor the doctors, your life becomes an unbearable hell as you come to realise no one trusts you at all including yourself.

    And then its downhill from there until you find your resolve.

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  97. Geez, I'm bawling reading this.

    I've had undiagnosed issues since I was 14. I'm 24 now. They weren't always as bad as they are now but have progressed over the past about decade. I used to be really intelligent and really sure of my ability to know when something wasn't right with my body. I graduated college and made As in every single class I ever took with the exception of one. I was very driven and had a ton of confidence in myself. However, after having literally dozens of doctors talk down to me like the biggest moron they've ever met and tell me I'm just making all of my symptoms up in my head, I've lost all confidence in my ability to know or do anything. I feel like the biggest idiot ever and am constantly doubting myself in everything I do. I sit in waiting rooms and think to myself, "God, what is wrong with you? Why can't you just stop this attention-seeking, running around to doctors behavior and leave their time to the people who have real medical conditions?" I lay in bed for hours with unexplainable, excruciating head pain thinking, "Why are you so stupid? Why can't you just stop making these headaches up in your mind and get on with life?" I sleep 15 hours straight due to the bone-crushing fatigue I get and then feel like I should get on my hands and knees and beg anyone who called or emailed me while I was asleep to forgive me because it was my fault for sleeping that long and blowing off any responsibilities I had to take care of. I run to the restroom 4 times in a single hour (or sometimes even wet myself) due to my urinary incontinence issues and think it's my fault as if I can just will my bladder to work overtime with my mind.

    Perhaps the most devastating part of this all is that, once so many doctors have told you it's all in your head, friends and family members begin to believe them. After all, they're the experts. My family members and friends who once believed me and were once understanding if I said I didn't feel well enough to go somewhere are no longer so understanding. They all think I'm a giant headcase. I have nobody left I can rely on for support or just friendship period.

    I understand that doctors are just human and can't know anything. I don't expect anyone to help me who can't. But do they have to take the extra step and tell me I'm stupid and a complete headcase? Can't they just tell me they don't know without placing the blame for the problem on me? They've ruined me doing that, and I'm only 24 years old. The scariest part is knowing that, if whatever is physically wrong with me doesn't kill me first, I could wind up living with this self-doubt and self-hatred that they've instilled in me for another 70ish years. It's not okay that they've done this to me.

    Anyway, I'm sorry for the self-pitying comment. I suppose this is my long-winded way of saying thank you for articulating my experiences and feelings better than I ever could.

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