Those of you who know me, know that I happen to have a
diagnosis of ME/CFS (Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome). Those of you who know me well know that I work hard not to
let it define me, despite its unpredictability and catalogue of disabling
symptoms. It's probably why I don't write about it as often as I once did in a
public domain. But, there are times when I get so frustrated and incensed at
some of the things that myself and fellow sufferers have to experience on top
of everything else (namely ignorant, misguided and downright spiteful comments)
that I can't keep my gob shut. And this is one such occasion.
A Facebook friend recently reported that, on a rare occasion
she was able to socialise, she was met with the comment below. This was
followed by cruel accusations of laziness and faking disability. And an account
of how this individual 'cares' for somebody with MS (Multiple Sclerosis) and she can't do things and
that my Facebook friend can and so my friend is just a totally lazy attention seeker. Unfortunately, most of us have
experienced similar. So, here are my thoughts.
"But it's not as if you have something like MS, is it?"
Well, no, it isn't. I can tell you what it IS, though - a debilitating
condition about which shit all is known. A condition about which misinformation
and misunderstanding (from medics and
the public alike) is rife. And if you happen to suffer with it for more than
two years, statistics would suggest you're fucked stuck with it.
In mild to moderate form, it may not kill you (unless you
happen to be one of the 51% of sufferers who have considered suicide as a
direct result of the symptoms ), but it will happily send your life down the
shitter, taking with it any shred of dignity, self worth and hope it can grasp
along the way.And yet the question comes, from well meaning souls and repugnant assholes alike: "But it's not as if you have something like MS, is it?". That, readers, is like saying to an MS sufferer "But it's not as if you have something like cancer, is it?". A pretty ludicrous comparison, right? So why compare ME/CFS/FM and MS in such a way? What purpose does that serve, exactly?
I am stumped. I've racked my brain over this. And the only logical conclusions I can come to are that they are either a) trying to make us feel better that we don't have a life threatening illness (that is of course a good thing, but it's not exactly at the forefront of our minds when we are too exhausted to open our eyes and in too much pain to move and too sick/nauseous be able to digest food) or b) trying to make us feel guilty because, well, if unlike MS it doesn't show up on a scan or in a test, then it can't really be real, can it? And if it's not real, then you just need to get over it and stop shirking because you're just a drain on society, resources and those around you.
ME/CFS/FM sufferers
are already haunted by guilt. Guilt that they cannot care for their families,
guilt that they are often unable to work, guilt that those who love them must
pick up the pieces. Feeling like a burden. Useless. Hopeless. Scared. Probably the very same feelings that haunt many MS sufferers. And all the while
battling constant hideous pain, exhaustion and weakness. As well meaning as it may be intended, the comparison of the two illnesses is as bizarre as
it is unhelpful. We don't need your unfounded opinions on top. Please, think before you
speak.
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