After almost twelve years of ME/CFS I thought I could handle anything. I know my body better, I know the illness better and I am able to do so much more by managing my symptoms. I can even advise others on what I know and where I was once unable to share my experiences, I find it easier to do so these days. This blog was the first step and now I have even started to write about my experiences with ME on Bubblews [EDIT: *30th April 2014 I no longer write for Bubblews so all posts have no been moved to this blog*]. I started off with an introductory piece on the illness called ‘Myalgic Encephalomyelitis’ which was a first for me as I had never actually tried to explain it in writing before. I followed that with a post about my ME story called Life as an ME Sufferer but I think my drive kind of fizzled out at the end there and I was forced to make a half-baked attempt at being positive.
But yesterday I wrote Have You Been Cruel to an Ill Person? which was my most difficult post so far. I wrote about the cruelty we face as people who suffer from an invisible illness. I know it is important for us to write about the ugly reality of illness, but it is not easy. I would love to only write about all the wonderful things in my life, and don’t get me wrong, there are plenty of parts of my life that I am so grateful for. I write about them too, from the horror movies that I like to watch, to local places and attractions that I love to visit when I am able to get out. But the truth is that people who suffer from invisible illnesses, who are afflicted with these awful chronic illnesses are so misunderstood and I can’t help but feel that the more we get our stories out there, the more we can lift the veil and show our side of things.
Today my sister contacted me to tell me about a book she was reading that had a chapter on Pain, Chronic Fatigue and ME in it. I know my sister loves me and she genuinely believes that what she is suggesting is helpful to me and that it will help me to get better. However, from previous experience, I know that my sister is very much into mind over matter and we choose illness and pain etc. I used to be exactly the same as her, if not worse, so I can’t blame her. But when I read through the chapter she suggested, I felt slap after slap. There were stories and testimonies from people who managed to cure or even alleviate their suffering from ME/CFS by visualisation and positive thinking. The implied message here is that people with ME or any other illness are ill because we are just not positive enough.
Then this morning I saw Liz Crow and Bedding Out and it made me feel so much better. It reminded me of my initial belief; the importance of getting our story out there. The Positivity Police no doubt see any kind of spotlight on illness as negativity and the reason for our continued illness. In a world where you are being advised to visualise beauty and light instead of saying “Hey, I’m in pain” or “This is how I spend time in bed, recovering” that which is our reality is seen as nothing but negativity.
Right now I may be feeling like I have taken a kick in the stomach, but I won’t stop. I will keep writing and our stories will be heard.