WEGO Health – Health Activist Writer’s Month Challenge

by Claire

Health Activist Writer’s Month Challenge Day 1 – Getting to know you


My name is Claire, and I have had CFS/ME since I was 18 in 2003. It took years, but I finally came to terms with my condition, dealt with the deep depression (for which I still take anti-depressants) and learned to manage my life around my condition. I could still work 3 days a week and have a relatively normal social life. I could exercise and work late at night, and go out drinking on the weekends as long as I rested carefully afterwards. In early 2013 I moved into a city apartment with my amazing partner Guy. I was allergic to car pollution among many other chemical compounds, and I became very, very ill. At my worst I could only walk 20 metres, and after exerting myself (by making a cup of tea or having a shower) my muscles would be so fatigued that I would drool – I couldn’t even swallow properly. After a diagnosis of Multiple Chemical Sensitivity and later another diagnosis of Neurally Mediated Hypotension I moved out of the city and began a very slow recovery. I can now walk around the block most days without any adverse reactions. I teach a few students piano from my home and I am independently mobile (I can drive myself to go on small errands as long as I don’t overdo it). I am just starting to unfold the anxiety that has developed as a response to the helplessness I feel at not being in control of my body, and it’s good to feel solid progress in this area. Unfortunately a severe back injury has made my life more difficult, but it is healing too, although I think using the phrase ‘excruciatingly slow’ is justified here. I am now off all pain medication and I manage the pain by not sitting for long periods of time.

My political activism is driven by a fervent belief that good legislation and careful regulation of business and industry can change this world for the better. My social activism is driven by the belief that people can only be what they see, and that we need to shine a light on the ways that society is perpetuating cycles of fear and rejection of the other through indoctrination and political manipulation, and that highlighting positive experiences of difference is a small step to healing the past. My health activism is driven by anger at the shocking lack of funding for the health and welfare sectors overall, and an acute awareness of how easy it is for people to fall through the cracks. I know because I was there, teetering on the edge; and it was only with the help and generosity of my partner and my parents that I fought the system and accessed welfare and could pay for expensive medical tests and treatments.

I blog as an outlet to help me process the complex emotions that come from dealing with a chronic illness. I need to grieve for my lost life and I need to search for meaning in a life I was unprepared to live. I blog to connect with other people going through the same problems as me – not only do I live a very restricted and lonely life, but there is a devastating aloneness that you feel when you have an illness that no-one can understand. It helps more than I can say to know that it isn’t just me who is carrying this burden. I blog in the hopes that someone out there finds my experiences useful: in this life where everybody takes care of me, I desperately want to be useful.