In childhood photographs, you can pick me out by the dark circles under my eyes. Insomnia would probably be one of my first memories, had sleeplessness not eroded my ability to form them. Then came the pain. I don’t remember how old I was when it began – but, slowly, my still-growing muscles filled with a strange buzzing. I told my dad that it felt like my blood had been replaced by mustard gas.
I visited doctors, who said what I was feeling was “normal” – even though none of my peers seemed to be experiencing anything similar. They were in the fullness of puberty; yelling across sports fields with newly lowered voices. I was in the background; a vampire, wiped out by simply staying upright in class. Then when night came, I couldn’t sleep.
By mid-adolescence, such was my chronic fatigue that I didn’t have the energy to remain at boarding school, but I was made to stay anyway. My parents, unable to cope with my barrage of unexplained symptoms, essentially ran away – literally in my father’s case, when he left my mother and moved abroad.
A decade later, what I was suffering from would be called “fibromyalgia” – along with a handful of other vague and unhelpful names that all meant one thing: we don’t really know what’s wrong with you. Fibromyalgia, you see, is a label given to a cluster of symptoms that can’t be explained; mainly chronic pain, fatigue and insomnia. It could be hundreds of illnesses. There is no test for it. No one knows what causes it, what continues it, or even what it is. A virus? A bacteria? A post-viral syndrome? A toxic reaction? Stress? Genes? Science hasn’t yet found the answers.
The UK National Health Service estimates that fibromyalgia affects one in 20 people in the UK. It commonly develops in those aged 30-50 and is present in seven times as many women as men. The most high-profile sufferer is Lady Gaga, 31, who recently revealed her battle with the condition in her new Netflix documentary Gaga: Five Foot Two. Last week, she had to pull out of a concert in Brazil after being taken to hospital for “severe physical pain” and posted a picture online that showed her attached to a drip. For fellow sufferers, she has prompted a much-needed discussion around fibromyalgia and recognition that it is, indeed, a genuine illness.
But, back when I was a teenager, doctors would shrug and say: maybe it’s growing pains. Maybe it’s stress. Have you tried exercising more? Have you tried exercising less? Have you had baths before bedtime, no screens before bedtime, soothing sounds of the sea before bedtime? Have you tried meditation, melatonin, masturbation, cherry juice? No gluten, no dairy? Antidepressants? Antipsychotics? I’d tried it all.
I’m now 25 and have never felt young. I have never been able to fulfil my dream of learning martial arts. My life has been spent trapped inside this mysterious disease. I hoped that one day I would wake up and feel energy in my muscles. I imagined taking a walk on a summer evening, my head clear and friendships a real prospect. But I always woke from broken sleep in pain. I have spent every birthday staring at the ceiling, remembering feeling just as bad the year before.
During my final school exams, in 2009, the doctor changed his response from “it will go away in a few months”, to “you’re depressed by school, it will go away when you leave”.
That autumn, my immune system being so weak, I got swine flu. It lasted for months. Night-sweats drenched me and I would wake in a pool of water at 2am. I had to crawl out of bed, freezing and delirious, to change my sheets and then try to sleep again. Thousands of people in Britain died that winter, and at many times I wished that I had been one of them.
I passed the time between Oxford admissions interviews kneeling over a bath, regurgitating green liquid. Getting into such a prestigious university was a superhuman effort – the hardest thing I’ve ever done – but I was determined to achieve this one thing for myself, maybe believing it would bring the fresh start I had been craving for the best part of a decade.
I took up my place to study literature in 2010, but soon found that – despite some financial and academic allowances made for me by the university – my illness was not understood there either. I lived with other students, but never fully explained my condition to them. I simply didn’t know how. I self-medicated with whatever was available; drugs, alcohol.
In my second year, I told one of my tutors that I was getting worse and was struggling to get out of bed. His advice – delivered with a chuckle – was to drink more Guinness. The message was clear: real men don’t talk about pain. That was the reason I hadn’t admitted the extent of my suffering for more than a year, and why I would never tell any other teacher after that day.
That tutor also took steps to prevent my recovery. I only discovered it four years later, but after our conversation he rang the college doctor and suggested I was diagnosed with a personality disorder. His logic, presumably, was that only this could have caused me to “indulge” in a decade of insomnia, fever and fatigue. I had sought help and ended up being debarred from further institutional support. That meant no access to the disability fund, no housing or travel assistance, and no extra time in exams.
My own GP was no better. He told me that my problem was stress, depression, or both – and that it would go away when I left university, just as it should have gone away when I left school. I was pretty sure depression didn’t involve a burning desire for a life of athleticism, and a future free from pain.
When I graduated, fibromyalgia stayed with me. I moved to Berlin – it was cheaper, and there was nothing to keep me in England – hoping to focus on recovery. But instead I lay in bed and watched my youth go by.
I am still here and still sick. As I write, the pain has moved to my ankles and chest, forcing me to hunch over in bed. I’m unable to focus on writing more than a few paragraphs a day. Last year, I was prescribed methadone and a handful of other drugs – but they only reduce the pain by about a third, and now I’m stuck on them. All I can hope for is more funding for research. A few promising studies in Norway have had success in treating fibromyalgia as an autoimmune disease, using rituximab, a powerful cancer drug. But the rest of the world is far behind where it needs to be in solving the riddle of this disease, especially as it reaches epidemic proportions. According to estimates by the CDC (the Centre for Disease Control and Prevention), in the past 10 years the number of global sufferers has risen by 100 times. But fibromyalgia – and its cousins, ME and chronic Lyme disease – remain largely hidden.
It was partly in the hope of making it more visible that I wrote my crime novel, Carnivore, which has just been published. It has allowed me to live vicariously the kind of action impossible to me in reality and bring fibromyalgia out of the shadows, as Lady Gaga is also now doing.
Nobody really gets better. I’m just trying not to get worse.
The Telegraph, London