'The consultant told me my illness didn't exist'
They used to call it yuppie flu but in fact ME (Myalgic Encephalopathy) was first identified as a specific medical condition over 50 years old. Stephen Colver has been living with it for 13 years. If you're not sure what ME is, check out our background briefing.
I was a psychotherapist. The first sign I really remember was being at a conference I had organised and being very tired. I had to keep sitting down. The doctor said it was stress but because I was teaching I didn't want to take any time off before the end of term.
During the holidays we went to Scotland and it was the day after I had driven back that I realised something was seriously wrong. I couldn't do anything. I couldn't walk. I couldn't think. I was emotionally all over the place.
The GP, in what was a classic misdiagnosis, described mine as 'the worst case of depression I've ever seen.' I was referred to a psychiatric ward. I was a therapist and I had had depression in my teens so I knew what depression was. I doubted the diagnosis but I was too in bits to challenge it. And if it wasn't depression I didn't know what it was. I certainly didn't make the link with the yuppie flu that people were talking about.
At least I was able to rest in the psychiatric ward although they weren't keen on that since laying in bed all day was a sign of depression.
I was put on Prozac which made things even worse. I was already hyped up on adrenalin and Prozac just added to it. When I came out of hospital I came off it.
A psychiatrist friend of mine was the first to mention chronic fatigue syndrome (CFS). But when I told my consultant psychiatrist what he'd said, the response was blunt: 'it doesn't exist'.
I saw a number of consultant psychiatrists and none of them were interested in the symptoms unrelated to depression. Circulation problems, poor temperature control and digestive problems. I was exhausted all the time. I couldn't even watch TV. I couldn't listen to music — it was just noise to me. I had severe night sweats. I couldn't speak or remember words at times. Sometimes I was too exhausted even to walk.
On one occasion I was describing all these symptoms to a GP and he simply pushed the button and said 'next patient, please' while I was talking. I realised that I'd been given the label: time-wasting hypochondriac.
The problem is — and I knew this from my professional work — that once you have a mental health diagnosis everything else is attributed to this. It's like a big label round your neck.
By now I wasn't working. I'd tried to go back a couple of times but I couldn't do it. It wasn't fair to my patients to stop and start. Eventually I had to take medical retirement when I was still in my 40s.
I had a psychiatric nurse visiting me just to give me someone to talk to really and he made the point that none of the doctors seemed to get.
He said, depressed people often get knackered but with you it's the other way round: you get knackered and that makes you depressed.
He told me the name of a consultant physician who was prepared to diagnose CFS. My consultant agreed to cross-refer me and after the various tests to rule out other conditions, the consultant physician declared me a classic case of CFS.
This made me feel better, oddly. I'd always kicked against the mental health diagnosis and now I felt vindicated. It was proof that I was not going mad. Now I had a name for what I was feeling I thought I could do something about it.
I did eventually return to part-time work — just a few hours a week — for a few years but then I had a major relapse. Today I'm pretty much housebound. I haven't been to church for four years. The picture of me in the rock pools above was taken last summer on my first holiday for five years. It put me in bed for a couple of weeks but it was worth it!
As far as my mind is concerned, it's a bit like having a state of the art computer one day and a cranky old Amstrad the next — none of your usual programs work, everything crashes and multi-tasking is impossible.
At the moment my regime has to be half hour activity followed by half hour rest whenever possible. I tend to wake up at about 6.30 and try to spend a little time with my son when he wakes at 7.30. I'll have breakfast and then rest before dressing at nine-ish. I do some relaxation exercises for half an hour or so — Chi-Gung breathing exercises. By around eleven I'm resting on the bed or pottering around the house if I can. I then do about an hour of Yoga Nidra and , if I have the energy, Wu-style Tai Chi (pictured), again to help me relax. In the afternoon I do more breathing exercises and yoga and rest again. If I can, I read, email friends, go into the garden or on a very good day, do The Guardian crossword. Maybe more yoga and breathing. I need to be in bed at 9 by the latest.
Psychologically I'm OK since I know what the problem is. It has made me question my Christian faith at times I must admit. I thought God and I were pretty good mates so this came as quite a kick in the teeth.
I was in hell for a long time. But what got me out of hell was acceptance.
Acceptance is a very big thing. Once I gave up trying to make myself better and accepted what I had, life improved. I'm not saying you give up. But you have to stop being angry and fighting. They both waste your valuable - and highly limited supplies - of energy.
I can't be a dad to my kids by playing with them or taking them to places but I can read them a story and if I can I'll bath and put my son to bed. I've spent much more time with my children than I ever would had I been working.
ME puts a dreadful strain on relationships. So many things have to be given up. I'm fortunate to have a very special wife who has stayed with me despite the bad times, as well as some great children.
My advice to any man who suspects he might have ME is to get diagnosed. Don't battle on on your own. There are ways of getting better but refusal to recognise the problem by pushing yourself to your limits is not one of them. You'll get worse — you need to recognise your own energy levels and plan around them.
For me, avoiding stress is key. I was over-conscientious at work I think in hindsight. I came from a working-class background and was the first in my family to have higher education. I worked very hard to get where I was and giving it up was a big loss.
My status and self-esteem, as they are for a lot of men, were tied up in what I did for a living.
Of course, the idea that 'you are what you do' is even more true for a psychotherapist because that is how you work.
I don't blame the doctors who misdiagnosed me but if they don't know what something is, the medical profession tend to take a diagnosis they already have in the cupboard. They don't like to say they don't know. I understand why — there's a lot of pressure from patients to be told what's wrong — but if you put the wrong label on someone, it's worse.
Before the cause of multiple sclerosis was discovered, patients were labelled as having hysterical paralysis. We had a similar problem in ME but things are improving now although there are still some dinosaurs in the medical profession.
We have to be honest though — we still don't know a lot about this condition. My symptoms have a lot in common with those of soldiers with Gulf war syndrome or victims of organo-phosphate poisoning. We need a lot more research.
- For more information on ME and useful links, check out our background briefing.
Page created on June 7th, 2007
Page updated on February 10th, 2010