When I first met the woman who would become my wife, she didn’t look ill. This was 1996, and I had just moved into staff accommodation for the job I had taken in London. I was in the lounge, a day or two after moving in. Bev was coming back from a weekend visiting her parents, and as she made her way to her room, past the lounge, she carried with her a computer. Like I said, this was 1996, so carrying a computer was no mean feat. My memory tells me that a friend was helping her. She may not have looked ill, but she was. At that stage she didn’t know what the problem was; she was increasingly tired, increasingly drained by the shifts she was working, and subject to a variety of tests to discern what the problem was. She moved job, within the same project, to an office-hours role; but the health problems didn’t go away. Some days she wasn’t able to get out of bed; not in the sense of simply feeling tired. In the sense of being unable to move. As a series of diagnoses were ruled out, eventually one was ruled in: M.E. – also known as Chronic Fatigue Syndrome, or (more cruelly) Yuppie Flu. No one really knew what that meant; allergies were tested for, but none found. Anti-depressants were prescribed for someone who wasn’t depressed. Some people live with M.E. for life; fortunately for Bev, she recovered.
Chronic Fatigue Syndrome is still, in some places, a controversial disease. The film Unrest (which I watched on Netflix South Africa) is a striking and moving self-produced documentary about one young woman’s experience of the disease and her attempts along with other sufferers to build awareness and get better treatment for it. Along the way there’s much that’s disturbing and light-shedding to learn: 85% of sufferers are female. Many medical ‘experts’ refer to it as caused by childhood trauma (known as conversion disorder – what was in times past called hysteria) despite a dearth of hard medical evidence to support this. In Denmark, a young woman suffering from the disease was forcibly removed from the care of her parents and treated for mental illness against her will for three years; at the time the film was released, she was still ill. We meet one young man who has been so afflicted by the disease that he has been unable to speak for a year. We watch the woman at the centre of the film lie motionless on the floor; we watch her and her husband both laugh and suffer through various attempts to change life-style in order to find a cure. We learn that with Chronic Fatigue Syndrome – as with many other chronic diseases – there is strong correlation with depression and suicide.
One moment in particular bought me up short and caused me to recognise myself. After a period of elevated activity and stress, we watch a sufferer ‘crash’ – shake uncontrollably as she lies on her bed; a response that we’re told happens after periods of emotional or physical exertion. This felt familiar; I have Ankylosing Spondylitis, a chronic, incurable arthritic disease affecting the spine and many other joints, along with a variety of other symptoms. I have been in various levels of pain every day for around 20 years; I can’t remember what being pain-free, and not taking medication, feels like. That also coincides with the length of my engagement and marriage. Occasionally, in the relatively early days before medication was found to manage my pain, I would shake uncontrollably from the pain as I tried to get in to bed or put on socks. One day I found myself shaking uncontrollably in a more or less empty school chapel, a few minutes after presiding at the funeral of a friend murdered by terrorists, a funeral filmed by television cameras, attended by over 1000 people including Desmond Tutu. It was, by any definition, a period of intense physical and emotional stress. I shook for about 30 minutes, and when I got home afterwards I barely moved for 3 days. The shaking was variously ascribed to needing something to eat, the heat in the chapel and plain old tiredness – all of which probably played a role. But from Unrest I see now it was also the crash of the body responding to the stress of keeping my diseased spine and joints functional under immense pressure. With pressure released, a valve was opened and the stress could be let out.
A.S. is not Chronic Fatigue Syndrome, but like many chronic diseases it is misunderstood and under-researched; both are more common than, say, M.S., but much less well-known or understood by medical professionals, let alone the general public. They are both invisible, and that is often the hardest part for the sufferer and the ones supporting them. Time and again I, for instance, will have to say ‘no’ to helping push a car or move a stack of chairs because of invisible pain. No one will give a sign of compliant; but you can’t help thinking … do they believe me? Am I really that sore? People will talk of being able to do … whatever it is … with a sore back, so you should do; doing another thing after a short night’s sleep, so the CFS sufferer should. This rarely happens to me these days; though many years ago, in a job reference, my then employer referred to me as ‘lazy’ for sometimes not helping with physical chores when I was in pain. I didn’t get the job.
As Unrest moves to its conclusion another resonant point is made. The narrator reflects that many diseases (I might name, for example, cancer) end with either ‘triumph or tragedy’. In my example, you become either a cancer survivor, or – like my mother – you die after a ‘brave fight’. We’ve all heard those phrases used. For CFS, AS, and diseases like them, neither happens. You just keep on. Just keep going. Some join you on the road for a while; but you learn to spot the moment when they realise that there will be neither triumph or tragedy, and they stop asking you, stop checking in. And God forbid you, the one suffering, say how hard it is. Struggling, finding it hard to bear the pain and the fatigue and the brain fog and everything else for 20 years past and 20 or more to come; none of that fits the convenient matrix of triumph or tragedy. There’s no prize for just getting out of bed; no awareness month for diseases that just keep on going. Carers lose support and friends; people grow weary of hearing how your finances are affected; how your sex life is affected; why you’re looking sad today; why you’ve put on weight. I’m still here, goes the song at the movie ends, in neither triumph nor tragedy. That’s the goal of the chronic sufferer and supporters – just to keep on keeping on; to many observers it’s an awfully boring goal.
Meanwhile, as Unrest highlights, some researchers do keep working to learn more. As money is raised and spent in its billions on the diseases which end in triumph or tragedy, research on chronic conditions like CFS and AS continues relatively unnoticed and massively underfunded and significantly misunderstood. Films like Unrest will make a difference; as will Becoming Incurable (which will focus on AS amongst other conditions), currently in post-production. For now, people like those in the film, like my wife, like me and many others will keep on, keeping on.