‘Knowing M.E., Knowing You” | Huffington Post blog | 26 January 2015

January 27, 2015

From ‘Huffington Post' Lifestyle, 26 January 2015 (words by Stephen Tudor).

Fifteen years ago I came down with the flu that turned into a prolonged post-viral thingy which was eventually diagnosed as M.E. I recall being very relieved at the news as I feared it might be something long-term.

Basic research in the time of dial-up and land-lines revealed that this was a woefully misunderstood condition that only seemed to strike middle-class teens called Rachel or Isabelle and whose existence was actively disbelieved by many. This last part was more than a little confusing to me.

From being a normal lad who went out clubbing, drinking, watching City and failing hopelessly with girls I now found myself waking each morning with red stinging eyes as if I'd been up for three days straight. My head would be swirling with a thick pea souper that Jack the Ripper could run amok in while my legs were aflame with agony. I barely had enough strength to lift a brew and generally felt like I'd gone ten rounds with Carl Froch after calling his girlfriend a minger. All this struck each and every day in the first few minutes of consciousness and it usually went downhill fast from there. Yet apparently it was all a figment of my imagination.

Those were gloomy, weird times indeed. Imagine being told with utter conviction from a stranger that what you had – whether it's an illness, the ability to recite the seven times table, or an actual living entity like a cat in your arms – wasn't actually real, and all because they once read an uninformed piece about it in a tabloid paper.

It's a bizarre and hurtful experience I can assure you.

For several years it felt like I was in freefall, and past every floor in my descent was the voice of a loved one shouting “I don't believe you are falling”.

During the past decade and a half I've mentally toughened up while enduring a dispiriting cycle of wellness, relapse, college, relapse, work, relapse, until finally, finally I found a plateau. I am now me rather than M.E with the illness knowing its place. I still struggle some days and it continues to give nothing for free – I've lost count of the amount of times my legs ache to damnation during encores at gigs – but in the overall scheme of things it has been reduced to a ball and chain of insufficient weight to prevent me from experiencing my life and the great big world beyond.

Yet as regards to the media's representation of M.E I regret to say that nothing has changed. Nothing whatsoever. It remains two-dimensional and stalled on the starting grid with either a worthy article that amounts to the same basic facts and stats cribbed from the M.E Association or features a girl called Rachel looking exaggeratedly sad in a darkened bedroom because she can't ride her horses anymore.

It may seem like I have something against Rachel. I don't of course. I've been there myself in a darkened bedroom, feeling like death warmed up, while elsewhere people with a quarter of your intelligence, verve, and drive whisper that you're lazy or cuckoo.
It's awful and almost Victorian in its ignorant callousness.

It took me a long while to realise that these kind are lacking in a rudimentary empathy that their own lives really should have given them. It's amazing too just how quickly they change their outlook when it effects one of their own. Some people just need to see things first-hand before it hits home and until then will take the word of an old copy of The Sun and a medical profession racked in hubris. I get that now.

M.E is a despicable, pointless, all-encompassing waste. It depletes, it disables, and it robs the very life-force from within you. Worse still the support structure that is so invaluable to those suffering is often absent through outright disbelief in the very thing that is ruining your existence.

This week in your town or city someone rather lovely and nice will be diagnosed with this illness. They'll be scared and confused and far too exhausted to do anything but absorb that fear and confusion. Statistically they will probably have a relative or close friend who gets up for work at 5am and fails to hide their repulsion at seeing this person stricken in a warm, comfy bed. They'll also have a friend who will say “I know what you mean. I've been feeling tired all the time lately”. Lastly, they will have a GP who will either apologetically shrug their shoulders in immediate defeat or be quite mean to them.

If you should encounter this person please understand that they're struggling and maybe ask how they're doing. We should be past this point. We really should. But for now that will mean the world.

Stephen Tudor tweets as @DaisyCutter1

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