It’s difficult to know if writing a blog to mark ME/CFS Awareness Day makes any difference. Am I changing the world? Does it have an impact?
Well yes, I think it does. Because the key word for me here is awareness.
I was reminded again this weekend, whilst chatting with my mother-in-law, of the ripple effect and that you don’t always need a BIG splash to have a wide reaching impact.
My mother-in-law was asking how I was and if I was noticing any improvement to my condition and saying how frustating it must be for me (having been largely housebound pretty consisently over the last 18 months). She herself has severe rheumatoid arthritis and has been fighting her own chronic (and often invisible) disabilities for many years. For a few minutes we shared the sense of frustration at not being able to ‘get on’ with things, of needing to change aspects of our lifestyles and attitudes to life. Two women looking pretty healthy and perfectly normal, sitting chatting.
I realised that whilst she can relate to some aspects of my condition I’ve also learnt a lot about hers. I now know that rheumatoid arthritis is more than just struggling to open jars and button clothes and something really old people get at the end of their life. She battles with pain and fatigue, mobility and side effects from medication. She’s had 2 new hips and 2 new knees and she was in her fifties when she had her first hip replaced.
In the same way as I learn through her experience she learns through mine.
Slowly, drip by drip, me and my illness touch the lives of the people around me. Sometimes it’s in bad ways because of the things I (we) can’t do or eat or go to and so on. Sometimes it’s in positive ways because of the things I (we) laugh at, talk about, do together and so on.
As my mother-in-law, my brother, my friend, my neighbour, my ex-colleague, see ME/CFS in my life they learn a little more. And in turn a small change in their thinking, their understanding, their knowledge is possible. They carry that change with them and are able to pass it on to others. They’ll be a little wiser the next time they see or hear about someone like me and I’ll know the ripple is out there.
My job is, I think, is to keep throwing those little pebbles into the water – by word and deed and by being.
Today is International ME/CFS Awareness Day 2008.
Read more posts at blogging for ME/CFS Awareness
Read more about my illness ME/CFS
I am a supporter of ME Research (UK)
“a national UK charity funding biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (also known as ME/CFS) … aim is to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of ME“