“ME, that’s the one where you don’t feel like going to work today,” Ricky Gervais once quipped on-stage.
He voices a common feeling. I have heard someone casually proclaim that they must have chronic fatigue after a busy week in the office. A friend once told me in confidence that she thought her co-worker who took time off work for ME (myalgic encephalomyelitis) had fabricated her condition. A teacher I know joked over dinner that he suspected that his student who misses school because of the illness was likely having a jolly time at home watching television. Even a recent Sunday Times column referred to ME as “yuppie flu”, an outdated term that implies the illness is the preserve of an indulged youth. It is comments like these that I have become more attuned to since my friend Chloe became unwell. Yet what is little acknowledged is that ME disproportionately affects women – in fact, four times more women than men suffer from it. So we need to ask ourselves, is our dismissal of ME sexist?
I have watched my best friend crawl up a staircase and fall unconscious, unable to drag herself to the top. I have seen her lie comatose on the stone slabs of a public building for an hour because she didn’t have the energy to sit in her wheelchair. Once, I had to help her drink through a straw as she lay corpse-like on my bathroom floor unable to lift her head. I have seen first-hand the extent that ME can completely upend a woman’s life.
The Sunday Times piece labels ME sufferers as a vocal “lobby” who are “indulged” by medical professionals to keep them quiet. But the truth is that far from being a mobilised ‘lobby’, ME sufferers are often bed-bound without the privilege of a large YouTube audience or the national press at their fingertips. They are also predominantly women. In fact, the way we discuss ME today is reminiscent of how we once high-handedly branded Victorian women ‘hysterical’ if we didn’t know the cause of their ailment. You might wonder whether if it affected four times more men than women, we would belittle it so easily.
I met Chloe while at university a few years before she contracted the glandular fever that would, seemingly overnight, lead to her ME. She was my companion throughout: we’d pull all-nighters in the library, amble dazedly to lectures the next day and frequent the nightclubs with our bad dancing. Whilst I was a sport-phobe, Chloe was on a team attempting to break the world record for the longest five-a-side football match. She was a black belt in judo. She was clever, endlessly curious and looked at the world sideways. In fact, if I wasn’t friends with her, Chloe’s successes and ceaseless good nature would be incredibly annoying.
The change in her condition was instantaneous and terrifying. From a new graduate in a competitive marketing job, living with friends, she was suddenly bed-bound and unable to live independently. She caught glandular fever, returned to her parents’ home and hasn’t left. As the glandular fever lifted, the ME set in. She started sleeping more and could only stay awake for three hours a day. “I remember waking up at 8pm after sleeping all day and inching my way downstairs for breakfast. I wanted my tablets and I wanted food,” she says. “I stood midway between the two and cried because I didn’t have the energy to reach either.’
Recovery is painfully slow. For Chloe it has been two-and-a-half years. All everyday activities have had to be incrementally built up to – things you don’t think about, like the energy it takes to have a shower, now have to be painstakingly calculated. Seemingly simple tasks like cooking or doing the dishes, can lead to an observable physical strain on her body. Outside or not, Chloe now has to use a wheelchair, or she has to use all of my (or others) body weight to help her walk. I’ve repeatedly witnessed her slow deterioration during a meal, at the beginning lively and buoyant and by the end hunched over and only able to move with extreme difficulty. Headaches coupled with nausea, dizziness and an inability to string thoughts together can ensue from something as mundane as a cup of tea with a friend. She struggles to read for longer than fifteen minutes at a time and even watching television can be too much of an exertion.
And yet the label ‘chronic fatigue’ doesn’t go any way in expressing all this – it basically sounds as though Chloe is a bit tired. This, and the fact that you could probably see Chloe for a short amount of time and think she’s making it up. For an hour she can be her charming, amusing self with no outward sign of anything wrong. Chloe can seem completely healthy, but this is an ultimately misleading impression.
It is also likely the cause of people’s misapprehension. They gently mock because what they do not see (unless you’ve lived with someone with ME) is the countless hours of rest they have had to take behind closed doors in order to manage any small task. If ME sufferers are sometimes able to get out of the house it is easy to assume they are perennially in good health.
We are becoming increasingly aware of the silencing of women’s voices in the sphere of health. ME is a case where we are lagging behind. Because ME is not usually bracketed as a female health condition these issues of silencing are not being raised. March this year was endometriosis awareness month, which all too rightly shone a light on a condition where women have to live with painful periods, excessive bleeding, pain during intercourse, and the possibility of infertility whilst waiting years for a diagnosis.
In much the same way, this light can also illuminate the personal experiences of women with ME, and encourage a move away from any suggestion that these women are lazy skivers, delicate snowflakes or just experiencing a bout of “yuppie flu”.
This piece was written with thanks to Chloe McNaught, who lives with ME