When I was a teenager, my mother fell ill with M.E. and I saw her struggle to get her symptoms recognised – even though she was a doctor herself.
Myalgic encephalomyelitis (M.E.) is a chronic condition which affects 250,000 people in the UK and around 17 million people worldwide. Also known as chronic fatigue syndrome, sufferers often struggle to get their symptoms understood, with 39% of GPs in the UK reporting that it’s the single most challenging illness to diagnose.
The broad church of symptoms is part of the difficulty. They can vary from headaches and flu-like symptoms to back pain, nausea and cramps. People living with M.E will also usually experience symptoms with differing levels of severity.
"My experience was at times hilarious if it hadn’t been so difficult," Mum tells me. "For example, there was the stress of trying to get to the interview for a disabled badge so I could park my car near to the park to take my kids there and not have to walk further than about 10 yards. When I arrived, the GP doing the interviews told me that if I could walk in and out unaided, I would not get it. I was in bed for a week after that."
My mother says that even though people didn’t understand her illness, they didn’t usually question that she was ill. "The surgeons at the hospital that I worked with took out income protection insurance as a result," she says, "as if I could be so ill, they realised that they could also be unlucky."
Evan Kendall, who is 23 years old and was diagnosed over a decade later than my mother, describes a similar experience of the illness. "It’s really difficult because you’re physically weak. You’re like that battery that never charges and dies all the time at 80%," she says. "I was diagnosed after two years of feeling tired all the time. Then I got ill with something like the flu and felt like I never recovered." Evan was tested for a range of illnesses including B12 deficiency and multiple sclerosis before she was eventually diagnosed with M.E.
One of the most widely recorded aspects of M.E. is that on average it affects four times as many women as it does men. Some have suggested that this is why it is often misunderstood. "Historically, pain conditions that primarily or solely affect women have not been perceived as credible, which has resulted in significantly less attention, funding and research," says Christin Veasley, the cofounder and director of the Chronic Pain Research Alliance. "Now that scientific evidence has demonstrated their legitimacy, funding levels have started to improve, although they are still not equivalent."
Evan, like my mother, found that medical professionals at times failed to grasp the severity of her illness. "One of the doctors I went to see told me that I had self-esteem problems," she says. "He told me that I just needed to start feeling good about myself."
Evan is also keen to emphasise that while women may be disproportionately affected, she believes there may be men who don’t report it due to a sense of shame. "I don’t think men get taken seriously when they have it [either]. It’s got that stigma of 'Oh it's a woman thing, how are you suffering that badly from a woman’s thing?'"
There is no known cure for M.E. and some sufferers will live with the condition for the rest of their lives. Around 25% of people living with M.E. are severely affected and unable to leave their homes; a proportion of these sufferers are bedbound. Evan says that one of the most challenging things about M.E. is the perception that it’s simply chronic tiredness. "People say, 'Oh it must be great, I’d love to stay all day in bed'," she says, "but it’s very different to being bedbound and when that is life for you from that point onwards."
"While around four times as many women and girls live with M.E. compared to men and boys, the severity of this horrible illness does not depend on gender, though we can’t ignore the role this has to play in the stigma that comes with M.E," says Clare Ogden from the charity Action for M.E, which works to raise awareness about the illness.
"We already know that women with chronic pain are more likely than men to be misdiagnosed with a mental health condition, and we support women and girls with M.E. who tell us they are frequently dismissed as emotional or hysterical. That doesn’t mean that men and boys with the illness aren’t stigmatised, too – instead, they face judgements about their resilience, about taking the illness 'like a man'. And regardless of gender, people with M.E. frequently feel invisible and ignored because of a lack of understanding about M.E. and its impact."
M.E. clearly changes lives, regardless of who you are and where you come from. Evan’s M.E. has had a huge impact upon her lifestyle – she has to take into account how exhausted she will feel after simple things such as seeing friends. "Before I wouldn’t have to plan anything but now I have to manage my life by my diary."
"It’s a club that no one wants to be part of," she continues, "but it doesn’t discriminate in who it chooses."
My mother has now recovered from M.E, but a vast majority of people don’t. She maintains that the invisibility of the illness is often the worst thing. "I want people to know how hard it is to be ill and not look ill, to have to manage your energy and not make yourself worse; and to have so little that medicine can offer."