Raising awareness of ME/CFS is something I try to do all year round. As a person with ME it’s not easy to be an activist; to lobby government, drive campaigns, raise funds or do anything very much in fact. But I think a slow drip-drip effect can be more effective than you might think.
Thanks to the internet I am able to connect with all sorts of people – both those with ME, chronic health conditions, disabilities and those without. Through my art blog, Twitter, Facebook, Flickr and others I can show aspects of an ordinary life affected by ME. There is more to me than my illness, which helps creates bonds and common interests, so that when ME is a factor it can be surprising, sometimes shocking, to others but it is another little nugget of awareness.
When I do come into contact with people face to face I talk about lots of things but I am also fairly open about the limits and challenges my illness imposes on my life and that of my family.
So when the hairdresser, or the guy who came to clear the garden say “ME – that’s where you’re tired all the time?” and I tell them how it can affect sleep, stomach, memory/brain function, give you aches/pains and never give you a day off for years and years. So maybe when ME is mentioned on the news, or down the pub, and someone says “that’s the thing where you stop in bed all day” they may be able to say “actually did you know …”. Because they met a friendly, kind soul once who had ME and told them how it was more than just tiredness. That’s my hope.
When my local Twitter friends arrange a social meet up and I explain I’ll be there only if I am well enough they start to see how ME affects everything I do or want to do. And when I manage to attend but am exhausted and ill the next day they get to hear about it first hand and maybe see that it’s a complex illness and see how it really impacts on a life.
hey find out I’m honest, friendly, happy, enthusiastic and kind. Not some mental case who has imagined an illness. They get to see how much I want to live a full active life and how ME makes that so impossible. And they find this out by getting to know me as a person, who happens to have ME.
I’ve heard so many times from family members that when they have told friends or acquaintances that I have ME so many reveal they know someone with ME too. And in talking about it they spread a little awareness and don’t feel so alone. Maybe that person will look at their ME acquintance in a different light after finding out more from my folks. Maybe.
I choose a couple of ME organisations to support and to direct people towards. For me it is ME Research UK and the ME Association both here in the UK. I try to keep it simple. When I can, I do more. I started the ME Aware blog this year to help inspire other people like me who felt a bit lost with ME Awareness Day/Week/Month and felt helpless to know what one person can do to make a difference.
Small things add up. Single voices can form a noisy crowd.
OK so maybe my little day to day efforts are not full on driven attempts for getting more funding for biomedical research, or getting clinical guidelines changed to be effective and fair, or making the benefits system fairer for those with ME and fluctuating conditions, or getting the media to stop saying “Yuppie Flu”.
But it is a drip drip drip of awareness. And one drop makes a ripple that can reach far and wide.