The other night as I switched on the TV I encountered the following exchange on the sitcom Benidorm:
“My mother’s got MS.”
“Sometimes think I’ve got that.”
“You think you have MS?”
“Yeah, sometimes. I read about it in a magazine. A lot of people think they’ve got it don’t they?”
“Do you mean ME?”
“Oh, I don’t know. Which is the one where you can’t be arsed to do owt?”
“I think you mean ME.”
“ME, MS, it’s all lazy buggers cracking on there’s something wrong with them, in’t it?”
Now I would hazard a guess that many MS sufferers found that joke amusing, safe in the knowledge that most people recognise MS as a genuinely debilitating disease, but many people with ME will not have been laughing. This is not because ME sufferers can’t take a joke, but because they know that many people watching that episode will share the character’s view that ME is nothing more than laziness, tiredness or benefit fraud.
You see the meaning of the joke is somewhat ambiguous: is it portraying the woman’s ignorance for failing to recognise both MS and ME as serious conditions, or she ignorant for confusing MS with something as seemingly trivial as ME? The truth is that every ME sufferer I know has had almost that exact same conversation at one time or another.
“ME? Isn’t that the one that makes you tired?”
“Oh, so you’re depressed then?”
“I get a bit of that sometimes.”
“You should see me when I come home from work in an evening.”
“I hate getting out of bed in the morning too.”
“We all feel tired you know but it’s no excuse for not doing things.”
“I read in the paper that you just need to do some exercise and you’ll be fine”.
“My nephew’s neighbour’s auntie’s plumber had that. She cured herself by balancing a turnip on her nose by the light of the harvest moon.”
Ok, so I may have exaggerated that last one a little bit (though not by much) and if you felt the ground shake a moment ago it was just the collective nod of the entire ME community as they read those words. If I had a pound for every time I’ve heard comments like these I would never need to earn another penny or claim any benefits ever again.
So if you’ve heard that ME suffers are tired or lazy, if you were unaware that ME and MS can be equally debilitating, or if (heaven forbid) any one of those statements has ever passed your lips let me clear up any confusion once and for all: contrary to popular belief ME ISN’T TIREDNESS.
I’ve been an insomniac most of my life so I know what tiredness is. I’ve performed concerts, played sports, aced exams and worked twelve-hour days off no more than two or three hours sleep, so believe me when I say that ‘tired’ wouldn’t stop me.
If you’re bone weary by the time you get home from work in an evening YOU DO NOT HAVE ME. Being tired after a hard day’s work is healthy and normal.
If you’re exhausted and achy after an hour at the gym YOU DO NOT HAVE ME. Tiredness after physical exertion is healthy and normal.
If you feel sluggish from a diet of takeaways and junk food, you find it hard to get up for work in the morning or you spend your weekend catching up on lost sleep YOU DO NOT HAVE ME.
You cannot get a ‘bit’ of ME any more than you can be a ‘bit’ pregnant or have a ‘bit’ of Motor Neurones Disease. Any tiredness caused by overwork, insomnia, poor nutrition, or strenuous exercise is not ME, your body is behaving in a perfectly normal way to the demands and stresses you are placing on it.
Of course fatigue is often a feature of ME in the same way that it is a feature of any illness; patients with cancer, Parkinson’s, MS or even the common cold will experience a degree of fatigue as a result of their body’s inability to function normally. That doesn’t make it the only or even the main characteristic of the disease.
A defining characteristic of ME is Post-Exertional Malaise (PEM); this poorly named phenomenon does not describe the immediate tiredness a healthy person feels after exercise but a severe, progressive and measurable worsening of symptoms over hours or days following even minimal exertion. For patients with severe ME any physical or cognitive exertion, however small, can be enough to trigger severe and potentially life-threatening relapse.
The reason I am too sick to work or leave the house is not because I am tired or depressed (though depression is no less valid a reason); it is because of seizures and blackouts and orthostatic intolerance that mean I cannot spend long out of bed without suffering complete collapse.
When I do too much I do not feel tired, I experience hours or days of transient paralysis, blindness, muteness, cognitive dysfunction, muscle spasms, migraines, vertigo, balance problems, vomiting and hypersensitivity to light, sound and touch.
When I talk of good and bad days I do not mean that I am ill only some of the time. I have felt ill every second of every day for the last ten years without a moment’s respite. The pain in my muscles, bones and joints never goes away and I can count on one hand (with fingers to spare) the number of days in that time that I have not had a headache.
When I talk of being in remission it does not mean that I am almost better and will be back to normal soon, it simply means that things are stable at the moment and I have not experienced a significant relapse in a while.
I have been ill for so long that I no longer remember what healthy feels like. It scares me to think that perhaps I never will. So if I fail to laugh at jokes that poke fun at ME, please don’t hold it against me; it is only a matter of time before ME (like MS before it) is finally recognised as the serious debilitating disease I know it to be. When that day comes, I’ll laugh as heartily as anyone at jokes about ME, safe in the knowledge that no one really believes them anymore.
Over to you:
Have you ever encountered these kinds of attitudes towards ME?
If you have ME, did you (like me) share any of these misconceptions before experiencing ME for yourself?
If you don’t have ME, does anything I have written here surprise you?
What is the most insensitive or ridiculous thing anyone has ever said to you about ME?