By David Tuller, DrPH
I am slowly adjusting to the new realities and what they mean for life and work for at least the next couple of months; this lockdown or “sheltering-at-home” or whatever is likely to continue through most of May, if not longer. This is a marathon, not a sprint.
Being largely homebound is not my normal existence. Yet after several years on this project, I have come to a much deeper understanding of how this is, for many people, a necessary and unavoidable method of managing their illness. And I’m sure many such people are experiencing a range of reactions as the rest of the world struggles to come to terms with this state of existence.
Here’s the first half of a thoughtful piece about the issue by Sarah Sweet, deputy editor of TVO.org, the website for a publicly funded media organization and television network based in Toronto. It was posted on March 26th. I am reposting this part with Sarah’s permission. I advise folks to click through to read the second half as well.
I’ve been self-isolating (more or less) for 13 years. Here’s some advice
COVID-19 has forced many people to stay home alone. As someone with chronic fatigue syndrome, I know a bit about what that’s like
by Sarah Sweet
When I was 30, I started getting the flu. A lot. Repeatedly. Every few weeks. At some point, I started to suspect that I was not unusually susceptible. I went to a walk-in clinic, and, after a number of tests, I was diagnosed with fibromyalgia, a condition marked by widespread pain and fatigue.
I told my family doctor. She told me that I didn’t have fibromyalgia: (a) I didn’t have the “right personality” for it, because I didn’t have “an investment in being sick,” and (b) it didn’t really matter anyway, because there was no test or established treatment for fibromyalgia, so why would a diagnosis be of any use?
So I got a new family doctor. I made sure not to sound overly self-pitying or credulous or convinced of my own fascinating not-wellness (given that some people view fibromyalgia as psychological in origin, it seemed important to appear grounded and sensible). Eventually, after visits to various rheumatologists, I was diagnosed with chronic fatigue syndrome, also known as myalgic encephalomyelitis.
According to the Centers for Disease Control and Prevention, ME/CFS is “a disabling and complex illness” distinguished by, among other symptoms, “overwhelming fatigue that is not improved by rest.” There are still no laboratory-testable answers about it. No one knows what causes it. Funding has generally been in short supply, although the Canadian government last year announced $1.4 million in biomedical research to “improve the quality of life of people living with myalgic encephalomyelitis,” of which there are 580,000 across the country.
The CDC also states that “people with ME/CFS may not look ill” — which, combined with the lack of reliable testing, has led (or allowed) some to conclude that “the syndrome was perpetuated by patients’ ‘unhelpful’ and ‘dysfunctional’ notion that they continued to suffer from an organic disease.”
I have persisted in the notion that I suffer from an organic disease for 13 years. I’m not saying that makes me uniquely positioned/equipped/the right person to talk about the COVID-19 pandemic. But it does allow me to get my dander up.
At the time of my diagnosis, I had a decent job. It paid well; it was unobjectionable. But I felt constantly as if I were being filled with concrete, brutally beaten, and drained of all blood — so I asked whether I could work two days a week from home. I had to get a doctor’s note, fill out forms, deal with skepticism from co-workers. Explain how it was that I could be infirm when I looked, if not sleek and lithe, at least reasonably hale. Working from home was seen as the equivalent of scarfing bonbons and lolling about on a divan.
Eventually, though, it became too much: I was too sick, too often. I went down to part-time, then quit. Later, I went back to school (from home) to gain new marketable skills (that I could market from home).
I am far luckier than many others with ME/CFS/possible fibromyalgia. I feel crappy all the time. If I walk more than a block, or climb a flight of stairs, or stay out for too long, my body gets numb and heavy, I start talking like a cartoon drunk, and I have to lie down for days — but I can still work. As long as I can work two days a week from home, I can work. As long as I do very little other than work, I can work. Many others with the condition are too sick to hold a job. They’re housebound or bedbound. And there are a lot of them.
But it’s been an adjustment — if “adjustment” is the right word, which it isn’t, because I haven’t successfully adjusted to anything. I’ve read articles about grieving and how necessary and inevitable it is in cases of chronic illness. Sometimes, while lying on the couch (which is mostly what I do), I will think, “It is time to grieve now. Grieve away. Really grieve the loss of your health, and then be one of those inspiring people who shows other people how it’s possible to deal with adversity with grace and poise and elegance and positivity and unselfishness.”
So it may seem rich that I’m now going to tell other people how to be more positive and unselfish about self-isolation. But that won’t stop me. I have had some experience with what it’s like to live a limited life. I have turned down social opportunities, stayed in, spent most of my non-work hours on my own with my beloved television. And now I have some complaints. And unsolicited pieces of advice.
First complaint: I have, to some extent, been self-isolating for more than a decade. It is difficult and annoying to see people on Twitter discover what it’s like to have to spend multiple days in an apartment with only books and television and video games and texts and phone calls for company. For many people, this is a new and terrifying reality. For me, it’s an exaggerated version of the last decade-plus of my life. I don’t doubt that it’s jarring. Just please don’t think that COVID-19 marks the first time that people have had to remain at home, without bars and festivals and sporting events, without in-person human contact. Remember that what you’re coping with now is what a whole lot of people have been coping with for years and years and years.
I try to remind myself to keep a certain perspective. I see tweets about people being forced to cancel book launches and graduation parties and vacations, about how hard it is to mourn missed or postponed opportunities, and I think, “You don’t know how lucky you were to have them to miss or postpone. At some point, this will all be over, and you’ll go to a coronavirus-is-over party, and I’ll still be here. When this is all over, my life will be much the same.”
But: perspective. “My life will be much the same” is self-indulgent, self-pitying, self-dramatizing. I will be going back to the office three days a week. I will once again be able to go out for dinner sometimes (as long as I schedule a day of rest on either side). When I get shirty and resentful about healthy people suddenly living constricted lives, I remind myself that others reading this — others for whom any kind of work or outing would be a complete impossibility — would be justified in getting all shirty and resentful about me.
Read the rest of the piece here: