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

Content note: mention of deaths in the community

May will be M.E. Awareness month. As the years pass I become more disillusioned with awareness raising. That’s not to say you should too.

How many more have we lost while our cause still gets swept aside? Another year gone, and are we any further forward? I don’t feel it, and I definitely don’t see it. (Anxiously waiting for Decode ME results this year).

Truly, there’s only so much neglect I can witness; it’s intolerable. Yet to have M.E. is to witness it; is to know that they haven’t so much as found a treatment or tool beyond radical rest and pacing. I’m tired, in every sense of the word.

I’d say I don’t care what assumptions people make about M.E. anymore, but I do. I have to. I have the privilege of being able to be out in the world now and again, and this tiny little platform online. I have to care because I care about you; people who’ve found themselves haunted by those two letters M and E, and belittled by its longer counterpart C, F, S. For people to undermine, ignore, and keep incredibly outdated assumptions alive is to do those things to you; people whose lives have come to an unjust halt because the snippets of good science aren’t backed up the media, governments, or adequate funding. And frankly, I will not have that.

So in lieu of feeling able to do more, I’m approaching May in a different way: to simply live with M.E., is to raise awareness of it. That’s what I’m going with this year. Let my neighbours be made aware of it, through the fact they only see me a handful of times a year. Let my nephew’s teacher see it when I collect my nephew once a term, with walking stick and a mobility scooter. Let the delivery people wonder why the woman that answers the door is often in dirty pyjamas with greasy hair. Let them see M.E., by so rarely seeing the wife, daughter, sister, or friend who never comes out or joins in. That’s all because of M.E.

Every single time we see a GP and tell them about our symptoms, that’s awareness raising. Every time we have to cancel a plan because we’ve woken up unable to keep them, that’s awareness raising. You’re already doing enough pals. We’re already doing enough.

So I will keep living my small little life and, as I do, people around me will be exposed to the truth of M.E., of slurred speech after exertion, of the battery draining from my body as I attempt to walk more than 10 metres, of constructing bizarre sentences that my brain has failed to accurately form, of strict time limits of socialising, of blotchy skin and discoloured feet.

And that will be my attempt at advocacy.

There is little else I can do I suppose, but keep going as I am.