When I was 19, I had great friends, a new relationship, and plans to travel across Europe as soon as I could. I was studying English language at Lancaster University, living on a campus so ridiculously bucolic baby bunnies hopped across my path on a regular basis. It felt like life couldn’t get any better.
By the time I was 20 I’d moved home, cancelled my travel plans, and taken up residence on my mum’s sofa, too exhausted to do anything else. I had what’s officially known as ME/CFS (and more dismissively called chronic fatigue syndrome) but it would be four years before I got a diagnosis. Like Jennifer Brea, whose emotional TED talk about her experience of the illness was posted online last week, doctors didn’t believe me either.
My symptoms started in my second year, after my friends and I moved into a house off campus. My legs ached all the time, I had to lie down for half an hour after I showered to get my energy back, and I teared up in lectures because I understood the words the lecturers were saying but couldn’t make sense of the sentences. I started spending more and more time in bed but only ended up more and more exhausted. I took the train home to Sheffield for a few days’ rest. I’d go back to Lancaster when I felt better, I told myself. I never did.
At first, my GP said I was depressed, which I was – my life and body were falling apart. But that didn’t explain my physical symptoms. Another seemed sympathetic as I laid them out: the exhaustion, lack of stamina, inability to concentrate, constant infections and gut spasms. But when my blood tests came back normal, he said there was nothing wrong. “What about my symptoms?” I asked. He shrugged.
Finally, I saw the specialist who diagnosed me. He said my ME/CFS was probably the result of a bout of glandular fever when I was 17. Most people recover normally, but for some of us the virus lingers in the body and reactivates later. There was no cure. As awful as it was to have my worst fears confirmed, I felt a surge of relief that someone understood what I was going through.
It wasn’t only the medical profession that had been sceptical. When I missed my best friend’s birthday party, her mum said she’d like to drag me out of bed and make me go. For almost a decade I had to challenge every assessment the DWP made about my entitlement to benefits, never winning without a fight. And I stopped telling people what was wrong with me after I heard the phrase “you’re so lucky to get to lie around and do nothing” one time too many. I sometimes wondered if other people were right, if I could do more if I pushed myself. But anytime I tried, I relapsed and couldn’t leave the house for weeks afterward.
I hope that young women today won’t find it quite so hard to be taken seriously if they think that something’s wrong with their health. But I also hope they keep fighting either way
I know it’s hard to believe someone’s ill when they look perfectly OK, but there’s more to it than that. There are an estimated 17 million people living with ME/CFS worldwide, 250,000 of them in the UK, most of them women. And there’s a history of health conditions that primarily affect women not being taken seriously by doctors, researchers and inevitably, laypeople too. As Jennifer Brea points out, this goes back 2500 years, when women with all kinds of health problems were told they had “hysteria”, which meant their wombs were flying around their bodies causing mischief. More recently, PMS, which affects up to 90% of women, has been studied five times less than impotence, which affects only 19% of men.
While the UK government claims ME/CFS is a research priority, it’s only allocated £1.65 million to the illness since 2011 and has typically focused on psychological treatments and graded exercise (i.e. slowly pushing yourself to do more) as potentially effective treatments– despite patients’ evidence to the contrary.
But there is progress. Last month, Norwegian researchers identified a metabolic enzyme blockage that might explain why the slightest activity is so exhausting, and another study suggests a cancer drug might bring relief. On the rare occasions I take a risk and tell someone I have ME/CFS, they tend not to call me “lucky” anymore. But I am.
My relationship ended, my friendships fell away, and I never did travel across Europe. In my late thirties, I still live with my mum. But 25% of people with the illness are housebound or bedbound. Some can’t move without help, some are tube-fed, and a few die from their symptoms.
I hope that young women today won’t find it quite so hard to be taken seriously if they think that something’s wrong with their health. But I also hope they keep fighting either way. It might not have made a difference in the end, but I do sometimes wonder if I might have been able to spend more of the last 18 years in the outside world if I’d been believed from the beginning.