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:
Alicia Butcher Ehrhardt, PhD says
You don’t understand. This disease we’re trying to avoid now is a potential death sentence for anyone who is older, chronically ill, and physically disabled.
The healthy people who get it can have a miserable 4 weeks if they’re not lucky, but still survive. Many have described how horrible it is.
I can’t imagine HAVING covid-19 – I barely make it through the days already.
And I know a hospital is likely to not help at all because the ‘ethicists’ have decided not to expend resources on my cohort.
The situation is unprecedented in my lifetime. I’m really scared that I might make a mistake – or someone else will, and my distancing and handwashing techniques won’t be good enough.
I don’t feel ‘less worthy’ – but that won’t be up to me.