Humans of ME/CFS
Since I was diagnosed in 2005 and two specialists in a row told me that it was incurable, my life has been an uphill struggle. I shrugged my shoulders at the terrible experiences with “normal” medicine and tried to move on. I was thrown out of the gastroenterology ward for just mentioning my ME/CFS diagnosis. I used violence to change wards from urology (many infections) and to psychiatry for ten days. Nice doctors suddenly yelling at me and others telling me that it was clearly psychosomatic because I was sitting too straight (I had had a car accident and a neck problem!) or because my skin was sensitive to air conditioning etc. etc.
I overcame my prejudices for alternative therapies and I studied different medical traditions from bed for around 20 hours per week for the last 11 years. Some alternative therapies brought good results, but nothing seems to bring a definite solution. Through study I tried to call my illness different names (mercury poisoning, reaction to medication, toxicity, peripheral neuropathy, Lyme disease). Yet, I fear that the unknown illness that everyone despises is what ails me.
Since 2007, every single day I wrote down my symptoms and my mood. I learned to count my steps, count my gestures, to save energy. For years I wouldn’t allow myself any negative thoughts, because they consume energy too. So, I didn’t have the chance to grieve the loss of all my dreams (I was less than 30 when it all started, starting a career, had moved to a new town, the world was mine). I didn’t think about the estrangement of relatives who wouldn’t believe I was sick (and would ask me to get up from the wheelchair to get them a glass of water), the struggles to keep a resemblance of a job, and my utter loneliness.
Even as I am not housebound and in constant pain anymore, I feel like a machine. Counting steps. Taking pills. Following strict diets then paying for one day of spontaneity by spending the following day very sick in bed. I don’t feel I can relate to any healthy people anymore. After 12 years, I don’t know what madness still gives me hope and the strength to keep fighting. Sometimes I get depressed. Then, I get up again. In 2005, I swore to try all the alternative therapies from A to Z. I did only a third of it. There is still hope.
Mainstream medicine now is more informed and I can try some neurologists. There is hope. For 5 years, I managed to hold on to some sort of career because I completely sacrificed my personal life since I did not have enough energy for both. Maybe, it’s time to give up the career too.
I can’t fake being healthy anymore and they don’t give part- time jobs to people with a weird diagnosis. I just want to have a life. To live, love, contribute, like everyone else. I wish there was a way to do that even without being totally healthy.