Friday, 12 November 2010


If you've always been relatively healthy, I think the thing that might surprise you most about becoming sick, is on just how many levels you have to fight.

You can. perhaps, imagine the physical fight. It's demanding, daily challenging, exhausting and unremitting. You live in a kind of endless Groundhog Day which just repeats and repeats as weeks turn into months and months turn into years.

From reading my blog and others, you might be starting to get an idea of the bureaucratic fight. The endless forms, the badly designed benefits, the assessments and statements and tribunals.

But, without any shadow of a doubt, the hardest fight of all is often with the very people employed to help you. The only times I've ever wanted to give up, have been when a doctor or nurse is either incapable of doing their job, unwilling to or - the worst of all - too cruel to.

A doctor or a nurse holds a unique position of power. They and they alone hold the key to unlocking our lives. They must write the referrals, they must make the phone calls, they must write the prescriptions and they decide what is wrong with us. Sometimes you are bedridden and totally dependant on a nurse and she has the power to decide when you eat, when you sleep, when you suffer in pain - even when you relieve yourself.

The first great Sickness Battle often comes when you are trying to get a diagnosis. There is an odd sense of being "guilty until proven innocent" but you're not sure what you are guilty of. It took me 6 years to be diagnosed with Crohn's disease - 6 years of being told I was "just entering puberty" "just depressed," or "just anorexic". the GPs only saw a young girl who was very thin and being sick a lot and decided they knew best. My poor mother fought and fought for 6 long years, before anyone even bothered to do a single test. It was frustrating, astounding even, to sit in a consultation, describe your symptoms and be told "It's probably all in her head" or "does she have any problems at school?" or the worst, "Are there any problems at home?"
Over and over and over doctors fobbed us off, sent us away and left us helpless. I loved school, had lots of friends and a lovely family life, but in the end, you even begin to doubt yourself. Am I making myself ill? Is it my fault?

The truly frightening thing is, this is not unusual. Read through the comments on this very blog, ask a friend with a long term health condition - this is the norm. GPs seem to exist as a barrier to care, a shield to guard precious NHS resources. First you are sent away. Then you are sent away with a prescription, then you are sent away with a different prescription, then, finally, if you are persistent enough you might be referred to a consultant.

I've spoken a little about pain. The truth is, though many hundreds of thousands of people endure terrible pain on a daily basis, very few are allowed any analgesia. Doctors have the power to choose to alleviate your suffering or not. More often than not, they won't prescribe strong painkillers and perversely, the more you beg, the more of a junkie you sound. I remember having to call a doctor out one night in screaming agony and when she got to the house and we explained that I had Crohn's, she gave me a good telling off, telling me she "Didn't prescribe pethidine for tummy bugs." I was clearly obstructing, but she didn't so much as examine me, although just a few weeks later, my bowel perforated.

The more you get to know your condition, the more of an expert you become. It often isn't long before you are the specialist in your own condition, with a wide knowledge of treatments, the pathology of the disease, it's symptoms and it's side effects. Soon, you know as much, if not more than your Consultant, never mind your GP. At this point you discover most doctors don't like this at all. They hate being told their job. You learn a thousand different ways to tell them things without seeming like a know all, to pander to their ego whilst making sure they do what you need them to. You never get cross, you never raise your voice, and you never, ever, cry. If you want to query a prescription, you imply that you are the forgetful one and can't quite remember the dose, so that they have to look it up in the BMJ and realise their own mistake. If they don't know what something is, you casually query an "article" you read describing something "a bit like it" allowing them to save face by mentioning the name of the complication as though you aren't sure how to pronounce it.

You fight to get the right medications, you fight to get treatments you desperately need, you fight to be seen before you become critically ill, you fight not to be given drugs you are allergic to, you fight to be admitted and time and time and time again, you fight for your life. It's not your job or your hobby, it's your life. When they say "Well, let's see how you are in a month or two," it's just their job, but a month or two for you might be too late.

I used to describe it like this : There are Vocational doctors and Conveyor-Belt doctors. Vocational doctors are wonderful. They want to make you better, they empathise with your symptoms, they hold your hand and sit on your bed and they care. Conveyor-Belt doctors are doctors because Mummy and Daddy would accept nothing less. They surf in on a wave of expensive education and arrogance, spraying us tiny people in their wake. They talk to a spot above your head, they never listen and they're too busy thinking about the Chief Exec's office to give any thought to what might actually be wrong with their patients.

When I first became a patient in the mid to late 80s, doctors still enjoyed an almost God-like status. They were autonomous, largely unaccountable and never questioned. A doctor who made a mistake was rarely struck off, just quietly moved to another hospital. An incompetent or ignorant doctor had the freedom to act as he wished, safe in the knowledge that the BMA would rarely step in.

Over the years, things have improved. Doctors are more willing to share best practise with one another and take on new ideas. They are more accountable and on the whole, have better patient skills. But, every now and then, even after 27 years with a double-doctorate in doctor handling, I run into a dinosaur. 5 months of my life were totally ruined as recently as last year by a doctor who simply refused to deviate from What He's Always Done. He refused to return any calls, mismanaged my care, left me in excruciating pain with a raging-out-of-control infection, and all of this eventually lead to me having a massive seizure. When I complained, the vast NHS net of silence descended, notes were lost, letters amended and that was that. Even with all my knowledge of the NHS, my infinite patience and masterful tact, I still hit brick walls and there is simply no way at all to penetrate them. Once a doctor has said "no" you have nowhere else to go. If a doctor chooses to take his time, you just have to wait, if he chooses not to believe you, then that's that.

Any government that really wanted to save the NHS money, would take on the BMA head on. They consistently block progress and innovation and still run what is as good as a "closed shop" when it comes to accountability. The entire doctor patient relationship needs an overhaul, but it's rare indeed to find a politician who is up for the fight.

**I wrote this little poem one day in bed, waiting for a house call from some unknown, on-call doctor. I wrote the first part as I fretted about whether or not they'd be kind or cruel, whether they would deign to relieve my suffering or just conclude that I was a junkie. The first part was written just after I called him out, the second part three hours after my original call, as I still hadn't heard. I was just 17 years old and already so cynical.......


He won’t believe me I know he won’t,
In his 4 x 4 and laboratory coat.

He’ll call straight back, she said he will.
I’m to tell him it hurts and explain that I’m ill.

He won’t be listening, anyway.
With his dinner waiting and golf to play.

He won’t sit down or examine me,
He’ll wait at the door, impatiently.

He won’t stay long, I’ve seen it before.
He’ll shove in the needle then run for the door,

But on the way out, he’ll find the time
To lecture me sternly for all my crimes.

He’ll scold my weakness in calling him out,
For eating or breathing or lazing about,

And all he’ll see is my skeleton frame.
He won’t check my notes or remember my name.

He won’t believe me, I know he won’t
In his 4x4 and laboratory coat.


He hasn’t called back, they never do.
We’ve called again, but I’m 4th in the queue.

He’s probably still at the golf club bar,
Or had one too many to drive his car.

But really, don’t worry, I’m used to it all.
I learnt not to scream, there’s no point at all.

It only confirms what they know to be "Fact",
My selfish psychosis all part of the act.

He won’t believe me, I know he won’t
In his 4x4 and laboratory coat.


  1. I initially had a GP diagnosis of Fibromyalgia, which to most GPs seems to mean...neurotic woman..all in her head...should pull herslef together. Took me over 5 years to get a referral to a rheumatologist and a diagnosis of a type of inflammatory arthritis with secondary fibromyalgia. Later got added a big fat prolapsed disc and carpal tunnel.

    I met a woman a couple of weeks back and it also took her 5 yrs to get a diagnosis of rheumatoid arthritis. She too had the label..Fibromyalgia. Her arm was even stuck in one position and they ignored it. By the time she got a referral and an RA diagnosis she had permanent joint damage.

    A physio friend of mine said if she had a diagnosis of Fibromyalgia she'd hang herself. This is because it is a real disease eveidence of which can be detected in spinal fluid, but most GPs think it's just neurosis. It causes immense pain which is invisible and makes people feel like they are dragging their bodies through treacle on a daily basis.

  2. OrganisedPauper - Thanks so much for backing up my experiences. I hope lots of other people comment too, because this really is the normal way of things, not just particular to me.

    I sometimes wonder whether there are any conditions at all that doctors don't write off as "neurosis."

  3. I've had symptoms of my condition at birth, but they all went ignored. Things started to get really quite difficult around puberty (my condition just happens to be made worse by estrogen and progesterone - all the more reason for people to cry 'neurotic woman' at me) and my doctors decided to brush it off as 'depression' and throw hundreds of different pills at me. *sigh*

    I've also been told it was stress, that everyone got like that sometimes, was told that (and I quote) 'everyone's different' when showing my GP serious deformities (fallen arches, knock knees, curved spine along with hyperextending joints and stretchy skin...)

    I once asked for a referral to OT and the GP laughed in my face saying 'it's not like you're DISABLED!' - yes, actually, Mr. GP, sir. I am. Just because you've not heard of my debilitating condition doesn't make it any less debilitating.

    When I was at school I was constantly told that I was lying and just trying to get out of school and my mother kept being told that I was doing it for attention and not to give in to me and my games. So she didn't.

    ...Basically, what I'm trying to say is that I'm now far far far worse physically than I should be at my age, because I kept being forced to overwork my poor joints, and on TOP of that I have countless mental problems and anxiety that make my life even more hell that can pretty much all be traced back to doctors not believing me...

  4. Sue....I know it sounds a bit crass, bearing in mind the subject matter, but I love reading your work. I mentioned sometime ago that I fought the NHS over their responsibility for my first born's hemiplegia, it took more than 5 yrs of trench warfare, before they were forced to withdraw their defence and pay up. I didn't do it for the money, I gave that to what then was called the Spastic's Society, now Scope, I did it because the arrogance and smugness of the perpetrators of the damage, those that you write so beautifully about, offended my sense of justice.
    Anyway, I know you are rising above the bullsh*t and won't take any prisoners, so eat your tea and build up your strength. If I see a guy in a white coat driving a 4x4, I'll give him the finger on your behalf. :-)

  5. Oh Ken, you do make me laugh. You've been a real rock of support for my blog, thanks.

    FNGN - Thanks for sharing your story. It amazes me that so many of us survive this far at all.

  6. Oh, I so much recognise what happened to me with this. I knew I had problems. I knew there was something wrong. Because I was never ever ill. I was always the strong one, and then one day, little by little, it all started going wrong.
    But I was given so much bad advice - and sometimes no advice at all (apart from 'lose weight').... and now I am ill, and seem to have to fight for everything that I used to take for granted.

    I do hope your stay in hospital is a good one.

  7. Sue - I couldn't respond yesterday when I read this... it just makes me want to weep.

    I read it to each of my daughters and they felt the same. You have described our repeated experiences over the last 21y.

    Your poem sums up so many times that they have waited in the middle of the night in pain, only to be told that there is nothing physically wrong.

    Actually, I'm not sure whether I want to weep or KILL on all your behalves!

    Syzygy Sue x

  8. Yes, sadly, this is my experience too. My ME/CFS probably originates from when I started to get recurrent bouts of tonsillitis as a kid in 1968 (although I don't rule out an inherited susceptibility). In 1973 I had Glandular Fever and never fully recovered. I told the GP then that I was not feeling better, but he didn't believe me and that marks the start of my career with health services (both here and in Spain) of not being believed, getting fobbed off, refused medication, etc., ad nauseam. My parents took the attitude that, if "the experts" say there is nothing wrong with me, there is nothing wrong. I've gone on to develop IBS, MCS, fibromyalgia and a host of overlapping problems - and depression, which is hardly a surprise. I finally got a diagnosis in 2008 (40 years has to be some sort of record), but I'm still fighting for adequate treatment and medication.