'M.E. myself and I' by Anna Redshaw

“They can’t really have had M.E can they?!”

Who are we to judge? 

I have been met with disbelief at one time or another and yet here I am questioning, albeit silently, whether or not a person has really got M.E. When did it become an exclusive club or a competition? Surely I should save the energy I’m using wondering whether other people have a ‘true’ case of M.E/chronic fatigue syndrome and spend that energy doing something much more worthwhile. 

I can see why we do it though. First and foremost there is no definitive test to identify our illness and that alone leaves room for scepticism. Diagnosis is given through a process of eliminating other possible diseases. Despite our condition ultimately being “swelling of the brain and spinal cord” many of us go without an MRI scan and other tests results come back completely clear despite these disabling symptoms.    

Chronic fatigue is not the same as chronic fatigue SYNDROME. (And then there’s the M.E. vs CFS/ME debate which I won’t get involved in.) Are these ‘fellow sufferers’ giving us a bad name by branding themselves as M.E. sufferers when they are infact not in the same boat as us afterall? 

It is infuriating to hear people say that when they had M.E. they “had no choice but to go out to work and earn a living.” With me there is no choice at all! I am simply too ill to function properly enough to leave the house once a week never mind everyday for week. The authorites could threaten me with allsorts and still I wouldn’t be able to do it. I am too ill to push myself like that. It is insulting that people imply that a Mind Over Matter attitude will get me out of the house and to work. It is insulting when people imply that we’re not trying hard enough to get better in the way that they did. Or that our attitude isn’t positive enough. All this from apparent fellow sufferers? If they were truly in the same boat as us I feel they’d be a little less tactless and a little more sympathetic.

It was reported some years ago that Michael Crawford had/has M.E. I remember reading his story in the paper in the early days of being ill and reading in disbelief how he went fishing everyday and enjoyed a quiet, outdoorsy life abroad which lead to recovery. Fishing everyday? Everyday? But then I’m remembered that some sufferers are still able to work. It doesn’t mean that they don’t have this wretched illness. No two of us are affected exactly the same so why do we still compare and judge? When people sleep or nap during the day I commend myself for not doing that because I’m actively retraining my brain into remembering that sleep is only for nighttime. But if it’s what they feel works for them, who am I to judge? I’m no expert or guru.  

There is a scale of M.E severity or ability; from 0% to fully recovered at 100%. I have moved up from 0-10% to 20-30%, although it’s hard to gage with such a fluctuating condition. You never quite ‘fit’ anywhere.

And now Martine McCutcheon has spoken out about her own experience of this plague, and already some of us are forcing our views and opinions about her situation on anyone who will listen. 

When I hear stories of complete recovery I admit to being sceptical about how long that remission will last, or whether or that the person could have really had M.E. in the first place. Can you recover from something incurable? Surely it’ll all come crashing down around them again one day? Maybe not tomorrow, maybe in ten years time but certainly one day. Would you turn against me if I recovered, and declare that I can’t possibly have been that poorly if I eventually recovered?

It’s unlikely that cancer patients are met with such disbelief from other patients so why do we M.E. sufferers do it? 

I’m getting fed up of people implying other sufferers are lucky because they aren’t as severely affected as others. None of us are lucky. No one with a condition like this can be described as lucky. Not when it comes to outer health anyway. Don’t make another sufferer feel bad because their suffering is different to yours. Don’t tell someone else how they should be feeling fortunate. “At least you can do x, y or z…” is something I’m seeing more and more. I know full well what I’m able to do and that I’m fortunate to be able to do it. I don’t need it to be pointed out to me. But thanks anyway. Don’t rain on my parade. Come and dance in the rain with me.

At the end of the day. who are we to judge?