May is both M.E. and Ehlers-Danlos Syndrome awareness month – it’s just a fluke they appear at the same time, but fortuitous for those of us who have both diseases. So what am I doing to raise awareness? That would be a big, fat, zero and I don’t feel guilty about it in any way.
One of the things I realized a long time ago is that I can’t be all things to all people. Not even as a fully functioning, healthy, strong woman could I be all things to all people, and I certainly can’t do it now I’m sick.
When I realized I was going to be chronically ill for the rest of my life, and would never again have normal energy levels, I made a conscious decision about how I was going to spend this precious energy and for me that was having a rescue animal, taking care of my parents, having a fulfilling hobby which helps my mental and emotional health, doing volunteer work, eating well (food preparation takes up a large part of my days) and getting enough rest to manage my symptoms effectively. Until then I’d read every new research paper which came out, belonged to several email lists/groups and was passionate about getting the message of how severe M.E. can be across to a wider public. It was exhausting and didn’t fulfil me (in fact all the bickering, stress and tension amongst the activists online was downright detrimental to my health) and I think I was only doing it because I felt like I should, not because I wanted to.
Every week I get invited by one or other of my friends to join a Facebook group or attend a virtual event of some kind, and I always decline. I’d love to have the time and energy to join in, but the reality is I don’t have either. Even after 20 years I still feel bad about saying “no” to these invitations, but just not bad enough to say “yes” and then put myself under pressure to join in and keep up.
It was a difficult decision to ‘drop out’ of the activism community, but my health comes first (and last!) and it was the right decision for me. There were excellent advocates to take up the baton on my behalf, and on behalf of the entire M.E. community, and they have done sterling work over the years (I talk more about M.E. than EDS because I’ve known about my M.E. for 20 years and the battle to have M.E. recognised is one of the scandals of the 20th century).
That’s not to say I don’t still spread the word whenever I get the opportunity. I write the odd article when I feel I have something to say – I’m currently waiting to have a double page article about MCAD published in the UK’s ME Association magazine (they published a 2 page article I wrote about my Ehlers-Danlos in 2011, and I’ve also had an article on mast cell disease published in the UK’s 25% M.E. Group magazine). When I received my EDS and MCAD diagnoses I wrote to my ME specialist, gastroenterologist, GP and neurologist to educate them on how to spot and diagnose both diseases – I received a very nice letter back from my ME specialist and gastro, and a shitty one back from the neurologist but at least I tried. I also gave information to my Dentist and Optician. I feel like I’m spreading the word through my blog and I know half a dozen people here in the UK who have been diagnosed with either EDS or MCAD after visiting my website 🙂 . I’m not going to crack the riddle of M.E. or EDS with these small measures, but I don’t have the energy for anything else and I’m OK with that.
I’m not going to put a blue ribbon or a zebra stripe on my Facebook picture this month, simply because I don’t talk about my health on my Facebook page – I don’t want to be defined solely by my diseases and need some areas of my life which are ‘normal’. And that’s also OK.
I don’t need a special day to educate people on my diseases – I do it constantly and in small ways which don’t impact my health and energy. I recognise the need to focus media attention for a set period of time each year, and applaud all the fabulous initiatives which are taking place to raise awareness of our “rare” diseases, but if you can’t do something special this month don’t beat yourself up. You’re sick – be kind to yourself and do what’s right for you.