Take M.E. Seriously

I know this is long, but please bear with me.
May 1st was ‘Blogging Against Disablism Day’. 2010 was the first time I’d heard about the blogging event. I read several interesting posts, including one with a poem asking for the world to look past the wheelchairs, walking frames, and white sticks of the “kids who are different” – whilst moving, this is the opposite of what myself and others are asking the world to do for those with the illness I have. We need to be seen, heard, and helped.
This year, M.E. (Myalgic Encephalomyelitis) Awareness Week falls on the 9th to the 15th /16th of May (with International M.E Awareness Day being on the 12th to commemorate the birthday of Florence Nightingdale, who it’s thought might have developed the illness).
The symptoms are different (yet similar) for everyone. There are neurological, cognitive, cardiac, cardiovascular, immunological, muscular and gastrointestinal (and other) symptoms.. They include: impairment of temperature control; poor concentration and memory; abnormal sweating; sleep disturbance; severe fatigue (induced or increased y physical activity and mental activity); nausea; vomiting; muscle and joint pain; headaches; dizziness; sore throats; heart palpitations; shortness of breath; being over sensitive to light and/or noise and smell; balance problems; muscle twitching; blurred vision; dyslexia; “brain fog”; emotional instability, and many others. It’s said to be characterised by post encephalitic damage to the brain stem (supposedly damaged in all M.E sufferers). The severity varies from person to person, with the worst cases resulting in sufferers being bed ridden and tube-fed, falling into comas, or even dying. Overexertion of an individual’s limits generally causes a significant worsening of symptoms. The illness can last months, years, or for a lifetime, and people who recover may relapse.

As a sufferer, I’m lucky. I didn’t end up in a wheelchair or bed ridden. I have the energy to feed myself and to take short walks. I remember my name every day. I didn’t drop completely out of education. I changed to a much small school, specifically set up for people who need more support and a more flexible schedule. I managed to get my grades up enough to pass exams and go on to college (high school in the US), where I scraped by and got into university, which I’m currently doing OK in (easy schedule at the moment).
These are things I try to keep in mind when I feel especially low. I spend almost every minute of class struggling to stay in the room because I can’t do what I need to in order to help my symptoms, whilst hating myself for not being able to concentrate (and I usually leave at the break – we need to get our attendance marks to pass; if we didn’t, I’d be there a lot less). I can’t talk loudly without risking my voice going. I can’t talk for long without this happening or without hurting my throat/my throat drying up (hence my constant sucking on mints – I think people think I’d have bad breath without them, haha). I’m often too tired to join in conversations or outwardly laugh. I can’t get a job because I can’t stand up for long as most customer service jobs require; because I can’t count change; because I’d soon get exhausted; because I can’t talk much; and again because I couldn’t help relieve my symptoms. This is obviously causing quite a problem on a few levels. Perhaps currently the worst thing (in the ‘bigger picture’) is that my memory is shot and my brain can’t organise a lot of information in a way that I can understand it. Even my wonderful partner gets frustrated by this sometimes. When it comes to him, I can write some information down and refer to it (his work schedules and important meetings, etc), though I can see why it’s upsetting when I forget his experiences and people he knows. But with university, I can study every day for hours, rehearse it repeatedly, yet learn barely anything (I do get a nice bout of exhaustion, though). There’s a huge ‘mental block’. The information is often there, but I can’t reach it. If someone tells me (or I read) that X relates to Y, I often can’t grasp the connection. Sometimes it takes several hours to get a short sentence in my head. I can’t learn most new words (words I haven’t known for years) and terms because I forget the meaning, which makes reading textbooks (and blogs/posts!) very hard. I’ll do the same thing twice because I’ll forget that I’ve just done it. I’ve studied some of the same theories in Psychology for each of the five years I’ve been taking it, yet I wouldn’t even be able to write a small paragraph about them. I don’t remember much of my past or of recent days. I can’t answer if someone asks how the weekend, or “yesterday”, was. In speech and in writing, I get a lot of my words mixed up.
No one knows the cause of M.E (C.F.I.D.S in America because sufferers are apparently denied an M.E diagnosis – also known as C.F.S and other names), but for years it’s been thought that catching a virus, even a common cold, could be it. Another suggestion is psychological trauma. The retrovirus XMRV is currently being studied (causing a recent ban on sufferers giving blood in countries such as Canada, the UK, and Australia – I guess now I can stop feeling guilty about not already donating), as well as other possibilities. Because of the many symptoms and unknown cause, getting a diagnosis can take years (four for me).
The fact that these possibilities are being studied is a big improvement from the past. Initially, the money received to put towards finding a cause or treatment was spent elsewhere because the illness wasn’t treated as ‘real’ or serious. Many, many sufferers were – and still are – treated as if the illness is psychological. They’re told that their symptoms are only in their mind; that they’re just lazy; that they need therapy; that depression is the cause. An extreme case involved a woman named Sophia, who was offered treatment in an M.E clinic. On researching the clinic (by talking to former patients), her mother discovered it was run on the lines of mental health, and (from talking to a worker) that most patients grew worse there. Sophia declined the offer. Against her will, she was then sectioned by her doctor and psychiatrist in a mental hospital. Two years later, in 2005, she died from what the coroner said was a “result of acute renal failure arising from the effects of M.E”.
Whilst M.E is being recognised more these days as a genuine illness, too many people, including professionals, still believe that it’s caused by depression (an almost laughable concept to the millions of sufferers who were once happy and healthy) and that the symptoms are in our minds. It is also extremely difficult to get disability benefits because of the invisibility of the illness and the negative stigma attached. A lot of sufferers are abandoned by their friends, even families, because of the belief that the illness is in their head and because they are unable to do so many activities. This often leaves them with no emotional or financial support.
There’s no cure, and any treatment by offered “former sufferers” requires too much effort and money for most of us to try.
This disease isn’t in my mind. It’s not in any other sufferers mind. It’s real, and it affects our lives in a huge way. This post might seem irrelevant for Feministing, but sufferers need all the support we can get, and I’ve found that the support here for disability rights (and this can be a very disabling illness) and for stopping discrimination against disabled people is moving. There are sites (e.g. on Facebook) that you can join, and M.E causes to give to, but I think the most important thing is to, please, if you ever hear a person or source state that this disease is psychological, tell them they’re wrong. Thank you.