In one of those odd random blips of popularity, my description of M.E. has been circulating around twitter and Facebook today. I found it quite interesting to read the way people described what I had written. People identified with it, and said that I had described the symptoms well. I found that comforting, in a way, because their identification with it means I haven’t imagined everything. When enough people tell you your illness is all in your head, it’s hard not to question if it is. Even to the point of wondering whether I’m saying I need to rest because I really need to, or because I’m lazy.
M.E. has a long history of controversy. Until very recently, no physical markers have been found for it. Diagnosis has been based on description of the symptoms and by ruling out everything else. Because there is no way to be certain of the diagnosis, public attitude to M.E. has been poor. Names such as “Yuppie Flu” are derisive and contribute to the attitude that people with M.E. are simply faking their illness, and are lazy or work-shy.
Many doctors have held the opinion that M.E. is a mental illness. They conclude that the fatigue and the pain are due to depression, and hold the belief that only therapy such as CBT and a slow increase in activity is necessary to cure the patient. In actual fact, the World Health Organisation classifies M.E. as a neurological disorder under Diseases of the Nervous System, G93.3. The Department of Work and Pensions also categorically states the CFS/ME is physical. Despite this classification, many doctors still believe that M.E. is purely a mental illness.
What is the impact of this belief? One of the defining features of M.E. is that fatigue is not explained by exertion, and in fact is out of all proportion to any activity. In my experience, the best management strategy for M.E. is Pacing. It involves making an effort to stick to a timetable of rests and a set level of activity, and working out how much activity can be undertaken and how much rest is necessary by gradually increasing activity until the maximum level is found, and staying at that level. If pushed into too much activity a person with M.E. will “crash” and may be completely incapacitated for a long time. The standard treatment for M.E. as a mental illness is CBT or GET which will push a person far beyond their safe limits.
Treating M.E. as a mental illness also appears to attach a stigma to it that just shouldn’t be there. Suppose for a moment that M.E. actually is a symptom of severe depression. It may change the treatment, but would it change anything else about the abilities of a person suffering from it? Would it mean that it was OK to tell someone “it’s all in your head” and “snap out of it”? Of course it wouldn’t. Depression itself is a real illness, needing treatment and medicine. Someone with depression cannot simply “snap out of it.” There are M.E. sufferers who are also depressed - I am one of them - but it is important to distinguish one from the other. I have had M.E. for ten years, and depression for a few months. It would be surprising if I didn’t get depressed at some point given the situation I am in.
If I could choose to be better, I would. Of course I would. I’m currently useless, stuck at home, in bed most of the time, my business is failing because I can’t work, I can’t even do any housework. I WANT to be well. I want to be rid of the crippling pain, the migraines, the dizziness, the insomnia. I want to be able to walk, to run, to ride my motorbike. So don’t you ever tell me to snap out of it. I might just have to beat you with my walking stick, just as soon as I find the energy.
Hey, I like your humour - “So don’t you ever tell me to snap out of it. I might just have to beat you with my walking stick, just as soon as I find the energy.” Humour is very important to survive 😉
In many ways, these problems (and some treatment issues) are similar with fibromyalgia, which most doctors (except those who deny it exists at all) now accept isn’t just a variant of ME/CFS. I’ve been reading about fibro, as my fiancée is in the process of probably being diagnosed with it. The official NHS patient advice for that even describes explanations as to why SSRIs work for fibro without amounting to it being ‘all in your head’. I don’t know what the official NHS patient information is like for ME/CFS, I admit, but I’m glad that she and I will be able to point to an official source if any doctors start giving us crap in that direction.
” I WANT to be well”
This more than anything. I want to be well.
i was diagnosed in january 2005 and have been lucky that the two GP’s i have had have been very sympathetic (one i saw as a one off for a mediaction review told me to ‘get out of the habit’-needless to say i refuse to see her now!).
i have also been lucky not to get depressed-i have suffered cyclical depression since my teens and so know depression well! in fact when i was diagnosed with diabetes in 2006…or 7 i cannot remember! my doctor remarked he was surprised i was not depressed with everything i had been going through.
i do get down though its hard not too~the other day i felt so exhausted all i did was lay on the sofa then thought maybe a ‘walk’ (actually a very short plod with every step giving me sharp, jarring pains) and some fresh air would do me good…hah who was i kidding?! i had to sit in the camper and watch my OH and dog walk i was so exhausted even talking was too much activity.its not the kind of thing to make you feel joyful!
there have been times when i have thought it was all in my head-usually on a ‘good day’ where i have maybe been able to wash up without having to rest immediately after but give it an hour or two and i know its not. i am my own worst enemy in that i try to ignore it and struggle to pace myself-mostly ignoring all the tricks of the trade given at the m.e support group then of course i pay for it.
i think the worst thing is actually not the m.e (fibro/diabetes etc) but the feeling of shame i feel because of the media and the governments total lack of sensitivity and how we with ‘invisible’ illness are shown to the world. we should not feel shame and embarassment but we do because often we know what is really in someones head~lazy, work shy, benefit scroungers.
I can identify with what you wrote above so, so much. I contracted M.E at the age of 14 after a bout of glandular fever. I saw a consultant who pretty much wrote off anything I was telling him and he just wanted to prescribe me a load of anti-depressants. My mum was the only person who believed me. I spent a whole year in bed and was still trying to keep going with my G.C.S.E coursework from home.
At the age of 18 when I was studying for A Levels, the migraines kicked in and have been with me ever since - I’m 37 now.
3 weeks after moving house at the age of 35, I slipped off one step outside of my house whilst putting the recycling crate out and broke my ankle. The fracture healed within 2 months but I developed Complex Regional Pain Syndrome and here we are today. Good days and bad days. Days when I can’t shower or wash my hair, days when the brain fog is so bad I haven’t got a clue what my name is or what day it is. I wish I had a pound for every person who has told me that ‘things will get better’ or that I should ‘think positive’. As you quite rightly said, as soon as I get the energy together, I’ll whack them with my walking stick!
Thank you for writing so eloquently. Wishing you many pain-free days ahead.
Nat x
I’ve always found that worrying will drain your energy,I have also found that yogic breathing(and yoga itself)are very helpful for relaxation,reduction of worry,better quality sleep and therefore a happier and more fullfilled life.Rationale.The better you sleep,the lore energy you have,the more energy you have the better your body works,including the brain,the better your view of events,and your decisions as a result thereof.