When I was first diagnosed with ME, I knew precious little about the disease. I was only aware of one other person who purported to have it, a lady I had known when I was a child. She was not someone I had spent much time with so what little I knew of her illness came through snatches of gossip from mutual friends.
I heard that she’d diagnosed herself in the hope of working fewer hours and claiming benefits instead.
I heard her doctor didn’t believe in ME, that it was a label doctors used to satisfy the need of hypochondriacs to feel that they were special.
I heard it was small wonder she was always so tired given the energy she must waste with her constant complaining.
I heard her symptoms were simply the tiredness everyone has by the end of a long working day, her dietary ‘requirements’ were self-imposed and she’d be sure to feel better if only she’d find herself a boyfriend, take up a hobby or join a gym.
I was too young to know if there was any truth to what I heard but I couldn’t deny that her illness seemed incredibly convenient, providing an airtight excuse for anything she didn’t want to do. She didn’t look ill and I’d see her out and about in town or the supermarket. I knew she went to parties and on day trips with friends. Teenage friends would joke that they’d claim to have her illness too if they thought it would get out of doing paper-rounds or homework.
I never saw her for more than two or three hours at a time and it never crossed my mind that what I saw might be only the tip of the iceberg and not accurately portray what her health was like the rest of the time. Mostly she just seemed needy and a little bit pathetic so when (after months of blackouts and balance problems, muscle pain and migraines) friends began to suggest that I too might have ME, I was genuinely offended they’d dismissed my struggles so lightly.
My assumption was that ME makes you tired. How could anything so inconsequential possibly explain why I was collapsing in the street, waking paralysed in the night or forgetting how to get home along roads that I walked on a daily basis?
When doctors too first suggested that I might have ME, I assumed they were fobbing me off with a meaningless label in the hope I’d be satisfied and not take any more of their time. Only I didn’t want to have a label, I just wanted to be well.
Most people’s reaction to a provisional diagnosis would be to find out as much as they could about the disease but I was so certain the diagnosis was wrong I did no research at all until my doctor asked how I could reject a diagnosis I knew nothing about.
So I began to read about the condition, and the more I read the more I realised just how wrong my assumptions had been.
I read that ME is classified as a neurological disease comparable to MS, chemotherapy, muscular dystrophy or AIDS and that a quarter of all sufferers are bedridden or housebound.
I read that ME affects people of every ethnicity, gender, nationality and socio-economic group including a quarter of a million sufferers in the UK alone.
I read that ME can be diagnosed in children as young as five, and is responsible for more school absences in Britain than any other childhood disease.
I read that people have died, and ARE dying, from this devastating disease and I could hardly believe that the illness I was reading about could be the same condition described in the media as ‘malingering’, ‘school-phobia’ or ‘yuppie flu’. How could something as devastating as the illness I was reading about be so easily dismissed as white middle-class women feeling tired all the time?
I read about blackouts, falls, transient blindness, sleep disturbance, poor temperature control and tender lymph nodes; as much as I wanted the diagnosis to be wrong, virtually all of my symptoms were there. I had thought my sysmptoms were severe but I was shocked to find that I was only at the moderate end of the spectrum. It was hard to imagine how it could possibly get much worse.
It took a long time and a lot of research for me abandon my assumptions and accept the diagnosis. It took even longer for me to lose the shame I felt about telling others I have a disease that is commonly assumed to be psychosomatic. For years I hoped I’d been misdiagnosed and would turn out to have something that doctors could treat, or at least something socially accepted and better understood.
Many patients describe stigma as being the hardest part of living with ME. Many doctors only believed in the illness once they or their loved-ones become personally affected. I know only too well the stereotypes and misconceptions that accompany the diagnosis and I have often wished to turn back the clock and apologise to that childhood acquaintance for listening to ill-informed gossip.
Every callous thing that was said about her has since been said about me and though it angers me to hear such insidious lies I can hardly judge others for the same ignorance that I too once entertained.
I just wish that I could have learned my mistake some easier way.