Almost everyone with ME/CFS has a story about the time a doctor tried to persuade them they were “just” depressed. This is mine.
A year after being diagnosed with ME/CFS, I relapse badly. Nauseous, feverish and weak, barely able to walk to the end of the street, I sign off work for a month, then another three. My GP takes blood and runs tests, but the results were normal. Unable to find anything wrong, he refers me to a specialist.
The specialist listens while I tell him about the nausea, the night sweats, the difficulty walking. Then he leans back in his chair and says, “I think you should try antidepressants.”
I’m thrown. The symptoms I’ve just described are physical, not emotional. “But I’m not depressed,” I say. “Let’s see, shall we?” he replies, pulling a questionnaire from a folder like a rabbit from a hat.
The questions are familiar: I know them from psychology textbooks. I could cheat – either way. But I’m curious. Maybe I am depressed, I just don’t know it. Isn’t that a hallmark of depression? What if I was depressed, and taking a pill could make this illness disappear?
Totting up my score, the specialist is disappointed: I’m not, officially, depressed. Disappointed, but not deterred. “I’d still like you to try the antidepressants,” he says. He seems to think we’re playing a game, one in which he knows I’m hiding something, and I know he knows I’m hiding something, but as long as I just agree to take the pills, we need say no more about it. I’m not hiding anything, so I refuse.
Four weeks later, still nauseous and weak, still barely able to walk to the end of the street, I ask for the antidepressants. Swallowing the small white pills, I feel anger and hope, both.
We sell our house, with its bathroom at the top of the stairs I can no longer climb, and rent a bungalow on the coast. Each day I walk the short distance down to the shore, wanting to be near the ready, expansive beauty of the sea. But something’s gone awry. Sunlight festers on the water. The waves break like tired clichés, over and over. The whole scene, rocks, sea, sky, is lifeless as an amateur painting.
That summer, the world takes on the hue of a stage-set – becomes flimsy, illusory, fake. I start to hate the bungalow, with its sunshine yellow walls and perky curtains, its garish roses and sickening green lawn. Behind the paint, beneath the grass and the shag-pile carpet, another world heaves. When I’m alone in the living room, deep pits open in the floor and try to swallow me up. I lie awake at night plotting to take my own life. The world is a trick. I’m still in the Emerald City, but I’ve taken off my green-tinted glasses.
At my next appointment, I tell my specialist about the sulky sea, the pits in the floor, the suicidal thoughts. I think he’ll be pleased, because I’m pretty sure this is depression. He isn’t; he’s concerned. He makes me an appointment with a psychologist.
A few days later, in a moment of lucidity, I look up the side effects of the antidepressant I’m taking. The list is long, and includes “suicidal feelings.” I call my GP, and he tells me to change brand, straight away. 10 days later I’m no longer trying to work out the best time to take my own life so no one will see and intervene.
I swallow the second brand of antidepressants for the next four years. I’m scared that my depression was part of my ME, that my suicidal feelings were the manifestation of some dark undercurrent of the illness. I’m scared that without the pills, those feelings will return. When I finally stop taking the antidepressants, nothing changes. My mental health stays stable. And my ME neither worsens, nor improves.
I experienced this depressive episode in 2008. It kickstarted years of fear and self-censure, in which the medical profession continued to suggest my illness was psychological, and I was encouraged to exercise and push through my symptoms. When my health deteriorated, and eventually I became bed-bound, I blamed myself: I was weak, I wasn’t trying hard enough, I must have some deep-seated psychological reason for staying ill. It would be another seven years before I met a practitioner who taught me my body needed rest, and how to pace my activity. “Respect the illness,” she told me. It was the single most helpful thing anyone has said to me in the 10 years I’ve been sick.
Antidepressants can sometimes be of benefit to people with ME. They can alleviate symptoms such as pain and poor sleep, and they can help – just as they can help people with any chronic illness – when patients become anxious or depressed as a result of being sick long-term. But this doesn’t mean ME/CFS is the same as depression, nor that antidepressants provide a cure; and it doesn’t mean ME/CFS is an illness of the mind.
The bizarre logic employed to argue that ME/CFS is depression – often “just” depression, as if depression itself were innocuous and easily cured, rather than a complex, poorly understood and sometimes fatal condition – runs something like this. People with ME/CFS complain of tiredness, but no physical cause can be found, so their problem must be psychological; people with depression feel tired, ergo people with ME/CFS are depressed. But it’s an arrogance in Western medicine that assumes that because its usual tests find nothing physically wrong, there’s nothing physically wrong to be found. Over the last decade researchers have discovered a range of neurological, immunological and endocrinal abnormalities in people with ME/CFS. In 2015 the US Institute of Medicine published an evidence-based report stating that ME/CFS is a serious systemic physiological disease and should not be seen as a mental health condition.
Despite this, much of the medical profession here in the UK and beyond continues to see ME/CFS as a psychological illness. This has to change. It’s not just a question of semantics, nor of patients with ME/CFS trying to distance themselves from the stigma often associated with mental health problems. Treating ME/CFS as psychological – conceptually, literally – can cause patients real harm. The psychological model of ME/CFS assumes its symptoms are simply the product of the mind or the imagination, rather than of a physical disease, and can safely be ignored. Patients are encouraged to exercise despite their exhaustion, weakness and pain, yet time and again – just as I experienced – they report that even minor exertion worsens their health. We need to keep talking and writing about ME/CFS until both the medical profession and the wider community understand the truth of this disease. We don’t yet know exactly what ME/CFS is, but we do know that it isn’t, as I was once told, “all in your head.”
If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.
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Thinkstock photo via psphotograph.