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.