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 - Published on Mar 26, 2020
The author and her cat, George. (Kyle Scott)

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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.

Second complaint: I am now fortunate enough to have an employer that’s extremely accommodating. Many others have not had so decent and reasonable a boss experience (if they’ve been able to have a boss). Now, all of a sudden, employers are discovering that working from home doesn’t have to mean sitting on the toilet, answering emails until your leg falls asleep, and then taking a sneaky nap. It turns out that it’s possible, even during non-pandemic times, for disabled employees to work and participate and enjoy vital shared bureaucratic experiences.

Third complaint: many people, because there is, obviously, a pandemic, have realized that grocery stores deliver. I have relied on grocery-delivery services for a while, because it’s difficult for me to go out and walk and navigate supermarket aisles and carry things. But now that we’re all trying to avoid grocery stores, there’s a long wait for delivery slots. Don’t forget that there are people whose only option is to get food delivered. It has been part of their routine for ages. And now they can’t get it.

Which brings me to my two final points.

I don’t blame healthy people for being concerned. I have been told for years — by doctors, openly, and by laypeople, passive-aggressively — that I am overreacting. That it’s all in my head. That if I could change my attitude, my limitations would prove illusory. So I’m not confident in my ability to distinguish between reasonableness and a stubborn insistence on the improbable.

In the case of COVID-19, the line between careful, considered response and ill-advised overreaction can be difficult to discern: we’re being confronted regularly with articles that counsel against overreaction and with articles that say no, we’re absolutely not overreacting. It may be both clichéd and misguided to conclude that it’s better to be safe than sorry — I’m not saying that we should all go mad, cry Armageddon, accept the prospect of certain doom. But there’s evidence that many people are at risk and that your friends and family are not crazy to be worried. Those who are exercising a great deal of caution may not be paranoid. They may simply be sensible.

What it gets down to is that we don’t know which characters we are, and we don’t know which movie we’re in. We’re either overreacting and will turn out to be the unwitting dupes in a dramedy about modern neuroses — or we’ll turn out to be the why-won’t-you-listen-this-is-serious types from every disaster movie ever made. We won’t know until this is all over. And we’ll have to decide long before then in which way we’d rather seem ridiculous.

Of course, we may never know for sure who the deluded and misguided people were. Since I got sick, I’ve had to weigh my own subjective-yet-pressing sense of how I’m feeling against a lack of evidence. I’ve had moments when I’ve thought that, even more than being cured, I want to be validated. If I can’t be healthy again, then I at least want an incontrovertible test result that shows I’m right to feel sick. In the case of COVID-19, there may never come a time when it becomes clear that these serious measures were vital: if they end up being successful, if they help flatten the curve, many will claim that they were never needed in the first place.

Those of us who insisted that the threat was real may simply have to reconcile ourselves to being viewed as hysterics in perpetuity. We may have to make peace with the idea that we’re perceived as the ridiculous ones — and, at the risk of coming off self-righteous, remind ourselves, firmly and repeatedly, that if we’re going to be disparaged, it might as well be because we didn’t want our family members, neighbours, colleagues, and immunosuppressed friends to get sick or die.

The final, and probably most important, point: the hardest thing for me, other than feeling like shit, has been accepting help. I hate it. I want to be able to fill my own refrigerator and do my own laundry, but I can’t. And I can’t will myself out of needing help. I can’t reason or inspire myself out of needing help. I need help. I have been lucky enough to have good and decent and thoughtful friends and family members who’ve offered it. Insisted on giving it. Thanks to these people, I have dinner every night and clean clothes to wear. During this period of more general societal isolation, I have people willing to acquire things and bring them to me. I am not alone.

There are people right now who have been stripped of the supports they’ve relied on. There are people who are only now confronting the fact that they can’t fulfil their own needs. There are a whole lot of people who need help.

We’ll hear a lot — and should hear a lot — about the good people who are stepping up in the face of COVID-19. The people who are picking up groceries for elderly neighbours, who are providing free child care, who are running errands for the immunosuppressed. We need these people.

But what I want to emphasize is that you may not be one of those people, at least not always. You may be thinking you should volunteer your time, check on that great-aunt who doesn’t get out much. And you should. If I may be prescriptive, though, there’s a good chance you won’t be that person for the duration, won’t be the potential helper in every circumstance. There’s a good chance that, at some point, you’ll need help. You’ll be the one who’s lonely. You’ll be the one who needs groceries and clean clothes.

This isn’t a warning. This isn’t a “Be good to other people now, because, when you’re aged, you’ll need support” thing. The point is that even the most independent, determined, self-willed people can end up needing help. So help other people when you can — and let them help you.

Kyle Scott is an illustrator based in Vancouver.

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