AS I WRITE this, I am considering whether or not to go back to bed for an hour or two. I’ve had one of those weeks: insomnia last Sunday night due to a migraine and early-winter skin itchiness (I took three Zyrtec allergy pills for that itchiness in the span of seven hours, which did not help at all, and finally just laid in bed, in the dark, trying not to scratch as I waited for my migraine medication to kick in); Monday and Tuesday brought chronic fatigue to the party. I tried my best to stay awake on Monday during the day (mostly with the help of caffeinated tea) but was so exhausted after taking my dog on his usual mile walk on Tuesday morning that I had to take a four-hour nap afterward–then pace myself the rest of the day so that I could get work done, finish chores, and sleep on Tuesday night with minimal insomnia interludes. Wednesday, Thursday, and Friday were marked by a flare of chronic leg and neck/shoulder pain. I’ve been luckier this week with the chronic pain: it hasn’t been quite as severe as it usually is during the colder months, although my consistently heating pad-covered lower back might disagree with this assessment. Last night, I went to bed at 10 PM and slept for 12 hours, not even waking up to go to the bathroom; when I woke up at 10 this morning, I felt like I had slept for two or three hours.
Most of what I’ve described above—sans the itchiness–is part of an illness that I’ve been living with for over 15 years. I have fibromyalgia, and although I have been writing about living with it for over a decade, sharing my experiences has taken on a newer, more anxiety-ridden urgency since the advent of the COVID-19 pandemic. That urgent need comes from the existence of long Covid (LC), which affects an estimated fifth of people who have had Covid, leaving them with at least one or more lingering symptoms after (supposedly) fully recovering. In some estimates, one in three people who have caught Covid will experience LC.
To be blunt: having chronic pain and fatigue is not something I would have chosen for myself, if I’d had any say in it. I say this not to blame people who have gotten Covid, whether they’ve dealt with an acute case or LC. But I do not have the ability to be calm about a mass disabling event, particularly one that has left millions of people dead, and millions more with debilitating symptoms that I can tell you from experience are life-altering in a profoundly shitty way.
Here are some types of pain that I experience regularly as a result of fibromyalgia: burning, itching, shooting, stretching, throbbing, pricking, stabbing, and squashing. That last one is probably better described as feeling like I am wearing an overcoat of bricks that I can’t remove. One of the weirder things about chronic pain—and one that tends to be misunderstood—is that it is constant. This is why well-meaning recommendations from people who do not have chronic pain or fatigue, advice such as “just work through the pain/fatigue” or “distract yourself from the pain/fatigue by doing [X],” can be so irritating and unwelcome. If you haven’t experienced chronic pain and fatigue that will be with you for the rest of your life, why are you giving me advice about how to deal with it? I’d wager that many of my fellow disabled people are tired of hearing well-meaning advice on how to live with said disabilities—advice that usually comes from nondisabled people who “read an article about [condition] on the internet” and just want to help. I am tired of “help” that is not actually help.
This is by no means a complete list, but I am also tired of: seeing Instagram photos of some of my mutuals unmasked and indoors at events with a ton of people; the CDC’s utter fucking incompetence and “you do you!” chirpiness when it comes to a disease that has killed over a million people in the U.S.; going somewhere indoors and immediately noticing that I am the only person wearing a mask; President Biden saying things like “the pandemic is over” on 60 Minutes and reaching a new apex of wrongness; wondering if I might be too concerned about the pandemic, somehow (as if being as vigilant as possible to avoid Covid is a bad thing); witnessing continued government and institutional failures, over and over, when it comes to actual mitigation strategies that work; feeling the entitlement of nondisabled people on an almost cellular level as the pandemic enters its third year; witnessing otherwise left-leaning publications like New York Magazine and the New Republic publish reporting that boils down to “but what if Long Covid and CFS/ME are actually PSYCHOSOMATIC?” instead of, say, assigning high-profile pandemic reporting to disabled writers.
In her piece “You Are Not Entitled to Our Deaths,” published in January 2022, disability justice activist and writer Mia Mingus gets to the marrow of abled entitlement:
“Abled culture teaches abled people to be entitled. You are entitled to never have to learn anything about disability and ableism […] Abled culture in our movements means that we will say, “we must center those who are most impacted,” all day every day, but then not include disabled people, especially those who are high risk, in the center during a global pandemic. Abled entitlement means that you will still continue to plan your vacation abroad, even amidst the Delta surge; you will still post pictures from your giant family holiday gathering amidst the Omicron surge.”
Photo by Geoff CordnerOn some level, I understand being “tired” of the pandemic. I understand missing “normalcy.” But for people who have debilitating chronic illness, chronic pain/fatigue, and/or long Covid, our normal sucks.
On some level, I understand being “tired” of the pandemic. I understand missing “normalcy.” But on a more honest, perhaps cartoonishly bitter level, I don’t understand it, because for people who have debilitating chronic illness, chronic pain/fatigue, and/or long Covid, our normal sucks. Being constantly fatigued is our normal; being in severe physical pain is our normal. Having to find out that most abled people do not give an itty-bitty bat-sized flying fuck about those of us who are disabled—especially if the pandemic has “ruined” their vacation plans, their holiday plans, their ability to do as they please because the mask feels weird, or they don’t believe that vaccines are safe, or they think Covid is “just like the flu” and easy to get over—that has become our normal, too. I suspect that there is no going back to the pre-pandemic version of “normal,” especially for people whose lives have been changed by LC.
In the last year, I have been lucky enough to get on a medical treatment plan that has gotten my pain and fatigue down to a mostly manageable level. At the same time, I feel angry that there are SO MANY PEOPLE who are stuck in chronic pain/illness limbo because—among other factors—the medical-industrial complex, particularly in the U.S., sucks at dealing with chronic, long-term illness in any capacity. Even with this more effective treatment, I still need to carefully pace myself when it comes to every damn thing so that I do not permanently backslide: work (I am unable to work a full-time job, so freelancing it is), going out and doing anything fun, spending time with family and friends, getting regular exercise and eating a balanced diet, and other basic stuff that most people don’t have to think about. There are days when I need to wait to (or cannot!) shower because the feeling of the water hitting my skin actually hurts.
So, from an angry chronically ill person’s keyboard to your eyeballs, some advice: keep masking. Keep social distancing when you can. Get your booster if you can. If you get Covid, stay home. Take the possibility of LC seriously before it has the chance to fuck up your life. Don’t accept legacy media’s “neutral” questioning of Long Covid and similar illnesses as neutral, because forwarding the idea that mysterious illness is psychosomatic is anything but neutral. Again, I do not mean to imply that people who get Covid, or LC, did anything to deserve either, but the rest of you might want to start listening to chronically ill people, disabled people, immunocompromised people, and people with LC.
If you get it, long Covid will change your life, and most likely not for the better. Dealing with chronic pain and fatigue—and I say this as a person who takes the concept of disability pride as a given—is difficult to adjust to at best, and at worst it will make you question everything you thought you knew about yourself.
Anna Hamilton (she/they) is a disabled writer. Their work has appeared in Bitch Magazine, Teen Vogue, the Disability Visibility Project, and many other places; they also write Citizen Cane (https://tinyletter.com/annahamilton/archive), an occasional newsletter. They live in the San Francisco Bay Area with their partner and their extremely spoiled Pomeranian/Yorkie mix, Sushi. You can find more about their work by visiting http://annaham.net, or follow them on Twitter at @annaham360.
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