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How to (Almost) Disappear Completely

I often wonder how it’s possible to be this sick and still be alive

Joseph Stashko
Jun 20, 2018 · 10 min read
Photo by Dawid Zawiła on Unsplash

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For the past few months, I’ve had a recurring dream. I’m running. I’m not running from anything, and there’s nothing hostile about where I am; it’s actually very close to where I live. I run and run, eventually stretching my arms out to either side of me, when a gust of wind picks me up and pulls me into the air. I’m above the pocket of south London where I was born, flying effortlessly. The sun is shining. Then the wind drops. I begin to fall. I am awake.

What I find most arresting about the dream is not so much the flying, it’s the running. It’s something I’ve been unable to do for over 18 months. I became disabled overnight in November 2016, after coming down with a fever and viral symptoms from which I never recovered.

At first, I tried to drag myself into work, noticing small but telling signs that something was wrong. Stairs required a concerted effort, and it felt like the world around my desk was moving slower than it had before, as if it were underwater and I was the only one who couldn’t swim. I developed a permanent sore throat and an overwhelming need to sit down on the train during my morning commute.

This was the norm for two months. Then one morning I woke up and my body seemed to collapse. Everything felt heavy, as if I’d been beaten up in my sleep. It was the day after what would become my last day of work.

Specialists in immunology, endocrinology, cardiology, and rheumatology ran seemingly endless tests, all of which came back with nothing out of “normal range.” By the final round, I was willing the doctor to find something wrong, however harrowing it might be, to justify why I felt so ill. One assured me that I would be fully recovered in a year’s time.

Another wrote a letter to my GP, saying: “the presentation is one of physical symptoms, but I had a strong sense that this was related to a mood disorder”. He encouraged me to take antidepressants, to pursue talk therapy, and to engage in an exercise program — after I’d spent an hour explaining that the mild exercise I’d been continuing since I fell ill had only made my condition worse.

I was collecting new symptoms every week and was soon unable to leave my bed. I could have understood if this were self-inflicted, but I’d embodied medicine’s prescriptions for a healthy life: I barely drank; I went to the gym three times a week; I willingly ate kale.

Several months later I was diagnosed with Myalgic Encephalomyelitis, or as it’s more commonly known, Chronic Fatigue Syndrome (ME/CFS). A name that conjures up the idea of being a bit tired is a particularly cruel moniker, underplaying an illness that affects around 250,000 people in the UK, millions worldwide, and has seen patients report a lower quality of life than patients with some forms of cancer. It has no known cure.

The New York State Department of Health recently described ME/CFS as a “serious, chronic disease that affects multiple body systems, including the nervous system, the immune system, and the body’s production of energy.

Despite this, it has been pigeonholed by some medical practitioners as a psychosomatic problem; an illness conjured up by the sufferer’s mind. We have, it seems, not learned from the lessons of multiple sclerosis, lupus and rheumatoid arthritis: all were at one point thought to have primarily psychological origins, or be heavily influenced by personality traits. This categorization is laughable.

To have ME/CFS is like flu taking up permanent residence in your body. Patients are crippled by a complete lack of energy, by muscle pain and weakness. Their cognitive abilities decrease, they suffer from insomnia and sensitivity to light and sound. Symptoms are shared between patients but also have different manifestations. For as long as I can remember, I’ve been a morning person, but now my body seems crushed by the weight of waking. I’ve also been plagued by constant sinus pain, tinnitus, wheezing, and dry eyes. My skin has taken on a strange new texture.

But the defining symptom of ME/CFS is “post-exertional malaise”: a worsening of all symptoms when the patient reaches a level of exertion above their threshold. For some, this threshold could be spending a whole day out without rest-breaks. For others, it could be raising their arm to brush their teeth.

I am closer to the latter. I can spend a couple hours watching television in the evening so long as I spend the entire day on my back, resting or listening to audiobooks. That’s all I can do, all day, every day. It is the day I’ve repeated for around nine months so far. The last time I was physically strong enough to make a meal for myself was over a year ago, and I’m unable to read for longer than five minutes without feeling dizzy.

My experience is not even the worst. There are some people whose illness is so severe that it results in years of being bedbound, unable to chew food or tolerate conversation or light.

Your body, once so used to spontaneous activity, is now ruled by an invisible dictator that deems quotidian things like having a phone conversation too draining. Push your luck and it repays you by amplifying your symptoms for weeks or months, draining you of energy. It’s like being allergic to effort. When I’ve overdone it with something trivial like having a friend round to visit, I’ve felt too weak to sit upright, think straight, or even talk.

Christopher Hitchens once said that instead of battling cancer, it felt much more like it was battling him, and that his experience of illness was much closer to merely resisting while an unstoppable foe went to work on his body. Similarly, ME/CFS is not an illness you can push your way out of, and to gain any level of stability requires putting the unhelpful trope of ‘fighting’ illness to one side.

When newly diagnosed and researching a disease that some studies have posited has a recovery rate as low as five percent, I was surprised to discover that we have known about this illness for almost a century. The first observed case of ME/CFS was recorded in Los Angeles, in 1934. Further reports, from the Royal Free Hospital in London in the 1950s, described it as a “benign myalgic encephalomyelitis.” In 1969, the World Health Organization formally classified it as a neurological disorder.

A year later, psychiatrists Colin McEvedy and AW Beard published a paper that would have wide-ranging effects on how ME was perceived. Though they hadn’t examined a single patient, they described the illness as a “mass hysteria,” on the evidence that young women seemed particularly susceptible. That gendered dismissal still colors opinions of its seriousness almost 50 years later.

Many patients are still not taken seriously by their doctors, who offer the only treatment options available via the NHS: Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET).

GET follows a hypothesis that the illness is partly caused by patients’ deconditioning, instead of deconditioning simply being a natural result of being very ill. In fact, a study designed to test deconditioning in ME/CFS patients showed that there was no statistically significant difference in fitness between ME/CFS patients and sedentary controls, when tested on several measures of exercise ability.

GET consists of increasing one’s level of activity gradually in the hope that this will cause symptoms to subside. Put simply, it prescribes exertion to the exertion-intolerant. Predictably, numerous patients report relapses and worsening of symptoms. Reading these accounts was especially chilling after my own experience with the doctor who was convinced I just needed to get more active.

GET was cemented as the first-line treatment for ME/CFS via the NHS by the National Institute for Health and Care Excellence (NICE) guidelines, and until recently was recommended by the Centre for Disease Control (CDC) in the US as a recommended treatment.

In 2011, it was the subject of the PACE trial, a clinical trial which has since faced serious criticism from both the scientific community and patient organisations. The trial’s definition of recovery was so weak that even if patients reported that their health was getting worse on the trial’s two primary outcomes, they could still be classified as “recovered.”

Objective results for ME patients involved in GET were also poor. After a year of engaging in treatment, the GET group’s walking speed was only half that of a healthy age-matched sample, and on average those who engaged with this therapy did not return to work or reduce their use of sickness-related benefits.

Despite this, GET and CBT continue to be recommended as the primary intervention for ME/CFS patients, despite lack of evidence of their efficacy and the significant flaws of the theory on which they are based. A recent, independent reanalysis of the trial data concluded that “the time has come to look elsewhere for effective treatments.”

This is not a rare disease. Its prevalence and the level of disability it causes make a mockery of how little money is dedicated to understanding how it affects people and how to make them better.

I have spoken to dozens of patients for whom ME has had the same impact that it has on my life. It has stripped me of my career and my independence, and dampened the part of my soul that thrives on spontaneity and activity. I have often wondered how it is possible to be this ill and still be alive, with no more medical assistance than a prescription to buck up and get out more.

To be severely ill every second of every day is difficult. To do so while acting as your own doctor, medical researcher, and nutritionist is even tougher. There are many diseases as severe as ME, but few which reside at the unpalatable intersection of being so prevalent, so debilitating, and so lacking in any meaningful support from the medical profession.

As filmmaker Jennifer Brea, whose Oscar-shortlisted film Unrest documents her own experience with the illness, has said, ME/CFS “creates a skeleton out of what you once were, and your ability to survive depends on your capacity to make peace with that skeleton.” Sometimes I feel like I’ve made peace with it, only for my sense of self to be eroded just a little more after a particularly bad day, week, or month.

You see your previous self as a ghost. Memories are imbued with dream-like strangeness, since they seem so distant from your new reality. The grand narrative of your life, in which you played the all-conquering hero, begins to fade; the script for the next act remains unread.

Before I became ill, I defined myself by my job at a national newspaper, by the things I bought and the places I traveled. This disease ripped those things from me and, with them, it stole who I was.

I’ve since attempted to build a new identity, one that doesn’t rely on external things and is instead based on who I actually am. But how do you define yourself when you can no longer create or contribute like you did when you were healthy?

Being ill like this also has a substantial social cost: it has been sobering to see how quickly I have been erased from other people’s lives, just by not being present. I have lost many friends because I’m not well enough to meet in person, and it’s tough for them to understand what someone with a severe disease is going through and how to help them. We lack the language to communicate with those for whom illness is a long term or permanent state.

I could live with these losses — they would feel almost worth it — if I felt help was on the way. But that too is an overly optimistic view when it comes to seeking answers to this illness.

Research funding in the UK for ME/CFS since 2007 totals around £10m, with only a fraction invested in biomedical-focused research. As a point of comparison, MS has received seven times that amount of funding, yet affects half as many people (100,000 in the UK). A recent study concluded that ME/CFS patients were “measurably more disabled than people with MS,” yet this fact is not reflected in our treatment of it, with research funding paling in comparison to other life-limiting conditions.

Not enough has been done for the decades that we have known about this illness, and not enough is being done presently. It is still underplayed by policymakers who have the means to improve care. In a House of Commons debate earlier this year, Minister of State for Health and Social Care, Caroline Dinenage, said of ME/CFS that “in the most serious cases, people can be bed-bound for weeks at a time.”

Though technically correct, the language used by the minister paints a very different picture of my experience of this illness, and that of many others. I have now been mostly bedbound for 39 weeks. I’ve spoken to other patients for whom that total numbers three, or even four figures.

The NICE guidelines for ME/CFS are currently under review — but this effort is not being coupled with a push for better research. NICE will conclude their review in 2020, by which time I will have been ill for four years and anyone else who is unfortunate enough to have fallen sick in that time will be prescribed the same course of ineffective and potentially damaging treatment.

The story of ME/CFS is bleak, but it needs to be heard. It is a story of very sick people whose suffering is doubted by the experts whose job it is to help them. It is a story of the impact that flawed research can have on a severely ill group of patients, and of what we as a society need to do to better understand and support those living with chronic illnesses.

We need to fund biomedical research, believe patients when they tell us that they are sick, and develop effective treatment options. After decades of knowing about this illness, we have nearly nothing meaningful to show for it. Not because we’ve investigated thoroughly and come up short, but because we haven’t even tried.

I hope that the story has a happier ending than the chapters that have been written thus far, and that other patients and I can return to good health. I hope that one day I’ll hear the sound of the shinkansen again as it comes rushing down from Kyoto into Osaka station, or simply just go for a walk outside in the quiet corner of London that I call home.

I hope that the next time I go for a run, it won’t be in my dreams.

Written by

Journalist: jostashko@gmail.com

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