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 â€œsheltering-at-homeâ€ 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 Iâ€™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.
Iâ€™ve been self-isolating (more or less) for 13 years. Hereâ€™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 thatâ€™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 byÂ widespread pain and fatigue.
I told my family doctor. She told me that I didnâ€™t have fibromyalgia: (a) I didnâ€™t have the â€œright personalityâ€ for it, because I didnâ€™t have â€œan investment in being sick,â€ and (b) it didnâ€™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 asÂ 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 â€œa disabling and complex illnessâ€ distinguished by, among other symptoms, â€œoverwhelming fatigue that is not improved by rest.â€ There are still no laboratory-testable answers about it. No one knows what causes it. Funding has generally been in short supply, although theÂ Canadian government last year announcedÂ $1.4 million in biomedical research to â€œimprove the quality of life of people living with myalgic encephalomyelitis,â€ of which there are 580,000 across the country.
The CDC also states that â€œpeople with ME/CFS may not look illâ€ â€” which, combined with the lack of reliable testing, has led (or allowed)Â some to concludeÂ that â€œthe syndrome was perpetuated by patientsâ€™ â€˜unhelpfulâ€™ and â€˜dysfunctionalâ€™ notion that they continued to suffer from an organic disease.â€
I have persisted in the notion that I suffer fromÂ an organic disease for 13 years. Iâ€™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 â€” so I asked whether I could work two days a week from home. I had to get a doctorâ€™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 â€” 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. ÂMany others with the condition are too sick to hold a job.Â Theyâ€™re housebound or bedbound. And there areÂ a lot of them.
But itâ€™s been an adjustment â€” ifÂ â€œadjustmentâ€ is the right word, which it isnâ€™t, because I havenâ€™t successfully adjusted to anything. Iâ€™ve read articles about grieving and how necessary and inevitable it is in cases of chronic illÂÂÂness. Sometimes, while lying on the couch (which is mostly what I do), I will think, â€œIt 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 itâ€™s possible to deal with adversity with grace and poise and elegance and positivity and unselfishness.â€
So it may seem rich that Iâ€™m now going to tell other people how to be more positive and unselfish about self-isolation. But that wonâ€™t stop me. I have had some experience with what itâ€™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 itâ€™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, itâ€™s an exaggerated version of the last decade-plus of my life. I donâ€™t doubt that itâ€™s jarring. Just please donâ€™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 youâ€™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, â€œYou donâ€™t know how lucky you were to have them to miss or postpone. At some point, this will all be over, and youâ€™ll go to a coronavirus-is-over party, and Iâ€™ll still be here. When this is all over, my life will be much the same.â€
But: perspective. â€œMy life will be much the sameâ€ 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 â€” others for whom any kind of work or outing would be a complete impossibility â€” would be justified in getting all shirty and resentful about me.
Read the rest of the piece here: