I just watched a TED talk by a woman with M.E.
It made me cry. It made me cry because she explained so perfectly how it feels to be misunderstood and misbelieved. Her story mirrored mine. The pictures of people with M.E. showing how their symptoms affect them made me realise how terrible it must have looked when I was suffering that badly. It made me think about how scared my loved ones must have been when they saw me like that.
It also made me angry.
She went to a neurologist who told her she had Conversion Syndrome, essentially a fancy word for hysteria. She was told it was all in her head. When I went to a neurologist I was told my symptoms were due to hyperventilation, caused by anxiety. I was told it was all in my head.
M.E. has been largely ignored by the medical and scientific community despite it affecting more people than MS. I think this is because it is so complex. There are likely to be both psychological and physiological causes involved. Just because there is no one virus that causes it, no physiological alteration found yet that is common in all cases, does not make it a purely psychological disease.
In the talk Jennifer explains how many illnesses, like epilepsy and MS, were attributed to psychological disorders before the equipment was invented to find the physiological causes. Many people suffered. Our hope is that in time a definitive cause for M.E. will be found and then work can start to develop an effective treatment. At the moment, people with M.E. are given nothing to help them with their illness. They are given no prognosis. Many quickly deteriorate and become bedbound, completely light and noise sensitive, unable to eat or communicate. They are the missing millions and a campaign was started to raise awareness #millionsmissing. Even though my 10 year battle with M.E. has been pretty hellish I am lucky that I have only experienced short periods where I have been that ill. I am lucky that I had help from a supportive NHS occupational therapist and since then have had the means to try out alternative therapies, counselling and the 90 Day programme at The Optimum Health clinic. I am lucky that I have managed to sustain part-time jobs and part-time study. Many are not so lucky. It is through this neglect and the stress of living with M.E. that many people develop mental health conditions like anxiety and depression. My anorexia was partly triggered by need to control something when my M.E. was making me feel so helpless. Tragically, many people with M.E. commit suicide.
I live in hope that more research will be done. I live in hope that doctors are better educated in the complexities of M.E. I live in hope that an effective treatment plan will be developed. I live in hope that stress management will be taught and encouraged in our schools and workplaces so that fewer people get to the dangerous stage of burnout that creates the perfect storm for M.E. to manifest.
In the meantime please watch Jennifer’s TED talk and see for yourself: