What Long COVID Taught Me About Mutual Aid

This is Autostraddle’s “How To Survive A Post(?)-COVID World” series. In some areas, COVID restrictions are lifting, but regardless of how “post”-COVID some of our individual worlds might feel, a pandemic and its lasting effects rage on. These writers are sharing their struggles and practical knowledge to help readers survive, heal and thrive in 2021.
On May 1, 2020, I was tested for COVID. This was part of routine testing across our Minneapolis social service agency following positive COVID cases among our clients. My positive test was a surprise to me — I didn’t have any symptoms beyond what I thought was pandemic-anxiety creating shortness of breath. I completed my ten days of isolation at home and returned to work. It was remarkably unremarkable. And — given that two weeks later George Floyd would be killed, the city would ignite in flames and hundreds of us would take over a hotel to get unhoused people indoors and off the militarized streets — it goes without saying that the “asymptomatic” COVID case I had was quickly forgotten. Instead, we were creating mutual aid networks to get supplies to neighborhoods whose groceries stores burned down. We activated community defense networks to protect homes and respond to fires. We raised thousands, then millions of dollars for abolitionist efforts around the city.

It wasn’t until around July 2020 that I started noticing what I would come to understand as some combination of Long COVID and post-viral fatigue. I started wearing a pulse oximeter when things like walking to the kitchen sink would leave me breathless and spike my heart rate. I missed two days of work after walking my dog one July afternoon because I got so sick afterward. I was experiencing shortness of breath; heart palpitations; tachycardia; night sweats; changes in taste, smell and appetite. Even the smallest exertions required recovery time. Every single entry I wrote in my journal during the month of July references my fatigue.

This pattern of vague, diffuse symptoms that left me completely wiped would continue for months to come. An entry in my journal from October 14th reads, “Well, I think a lovely evening drinking with my brothers brought on a relapse of symptoms. I’ve been off work Monday and Tuesday this week and I’m feeling like crap today. I wish I had started keeping a symptom log earlier in this process because it feels silly to try and start one nearly six months in”. It continues with a list of symptoms: short of breath, chest pain/ pressure, shaky hands, flushed face/ itchy skin, fever feelings/ chills despite no fever, brain fog, palpitations (“not racing heart, but pounding heart”), muscle weakness/ heavy limbs, headache (“dehydration? COVID?”), fatigue (“as usual”).

Despite this list of symptoms, no doctor or test found anything wrong. My blood work was normal. The Zio patch heart monitor I wore for two weeks was normal. In September, I took myself to the ER thinking I had deep vein thrombosis due to swelling in my ankles and a severe calf cramp that lasted almost ten days. My CT scan and the ultrasounds were normal. Every additional COVID test I got was “not detected.” With a litany of normal tests, it was hard not to question my own sanity. Am I actually sick? Am I making it up? Do I really even actually feel that bad? And yet, I was still missing multiple days of work per month and the time between sick days was getting shorter and shorter.

I finally collapsed in January 2021. I had been sliding down a hill picking up speed toward this inevitable collapse for a while, but I just hadn’t been able to admit it to myself. It wasn’t until I literally shit my pants at work that I finally admitted defeat and requested a short-term disability leave. January 29th, 2021, was the first day of what would end up being a three month medical leave.

In May, I returned to work part-time. It turns out that the medical leave wasn’t actually enough to cure my Long COVID symptoms, but it did give me enough space to reflect on which COVID lessons are worth carrying forward into the post(?)-COVID world. Going back through my journal entries, notes in my phone and blog posts from the last year, it surprised me to realize that the same things I need in order to manage my Long COVID are the things we all need for the future we are creating: mutual aid, seasons of receiving along with our seasons of giving, self-care that is directly connected to community care, less work, body trust and disability justice.

If you’ve never had a health crisis like this before, it’s quite humbling. I’ve never been good at asking for help, but when you’re so collapsed that you literally can’t manage, you’ll be amazed at how much help you ask for and how the help you ask for still won’t be enough. I had always believed in mutual aid, but I can’t say I had fully comprehended the mutual part. Mutual aid is mutual because, as much as I hate to admit it, we all need more support than we can provide ourselves. I had to ask for help not just once, but repeatedly for months, and I’ve come out the other side as a mutual aid evangelical. People ordered me dinner — not once, but weekly; delivered me meal boxes; brought my flowers and sent me care packages. The more we can think about our personal resources as resources that are meant to be shared, the more we can get our own needs met in our own seasons of receiving; our “winters,” as Katherine May calls them in her book Wintering: The Power of Rest and Retreat in Difficult Times.

I spent weeks in collapse mode, unable to even consider “active recovery”. I watched eight seasons of Supernatural in the first three weeks of my leave and showered only three times in that same timeframe. And do you know what I would find myself thinking about in moments of quiet? Work. How fucking miserable is that? It’s like even though I knew I was off work, my body didn’t know I was off work. It occurred to me that there is a part of my body that has been made to feel unsafe by the chronic demands of work under capitalism. Intellectually, I know I feel safe at work and, arguably, it sounds ridiculous and even dangerous to throw around phrases like “feeling unsafe” so loosely. But my body’s autonomic responses to stressors don’t know the difference between “real” threats and perceived ones. The pervasive demand by society to Do More left me feeling trapped and even — as my therapist sometimes suggests — traumatized by insidious pressures to work, even as my body continued to wear down. In a March 4th blog post, I wrote, “Tonight I did a really casual search for ‘social work’ across a couple of job boards just to see how it felt. I started to cry.”

I did eventually stop watching Supernatural and turn toward healing. It turns out that the diagnostic and treatment process for Long COVID, even in a very mild case such as mine, is practically a full-time job. My process has included a post-COVID doctor that I’ve seen every six weeks since February, an MRI of my brain, a neurology appointment, chest x-rays, an overnight sleep study, multiple sleep appointments, a referral for a neuropsych exam I still haven’t had, a pulmonary function test, a pulmonology appointment, weekly physical therapy, weekly occupational therapy and, coming up, voice therapy for my damaged vocal cords and breathing muscles. My occupational therapist prescribed me fatigue management tools like blue light glasses and note-taking, an 8:30pm bedtime, sunglasses in the grocery store, smell and taste training and more. My physical therapist prescribed me a maximum heart rate of 120 (now, after two months, 140) beats per minute, thoracic stretches, breathing exercises and 20 minutes of walking every day. The sleep doctor prescribed me iron supplements to help with restless legs — supplements that also cause digestive distress. The neurologist told me nothing was wrong “except for the obesity.” The pulmonologist prescribed me an inhaler and suggested that it will be awfully hard to lose the weight I gained when my heart rate needs to stay so low.

Throughout this entire process and as of this writing, the short-term disability claim I initiated in late January has never been approved. I had zero income during my leave because the insurance company still doesn’t have the right medical documentation to prove that I needed to be off work. Even with relatively good health insurance, healthcare is prohibitively expensive and disability insurance benefits (not that I ever fucking got them!) only cover 60% of wages. It was here that the mutuality of mutual aid really came into high relief. After years of facilitating things I call “barnraisers” on Twitter, I needed my own barnraiser. I created a Plumfund, emailed a pointed ask for help to 36 people and shared my ask on Twitter. In four days of fundraising, my community put together over $12,000 for my partner and me. Caring for myself and asking for that help allowed me to get back to the business of recovery and has kept me connected to my community, even in my season of receiving.

I returned to work in May — not because I was physically or spiritually ready to go back to work, but because that was when my short-term disability benefits were due to run out (not that I ever fucking got them!). And, in order to potentially qualify for long-term disability benefits, I had to return to work at least 20 hours per week. If I’ve become an evangelical for mutual aid during this health crisis, I’ve become a zealot about the need for all of us to reduce how much we work. I learned from Long COVID (and my occupational therapist) that my body is my compass and also my captain. If I don’t submit to my body, it will shut the lights off regardless. From my March 19th blog post: “My body has been very clear with me in it’s absolute refusal to participate in work. I said to a fellow disabled friend yesterday that the level of bodily refusal to even entertain the *idea* of work feels so strong that I actually feel like I will be abusing myself if/ when I have to return to work.” My body gives me very clear cues (fatigue, malaise, brain fog, tinnitus, body pain, nausea, hand tremors, etc.) when I exceed my capacity. While I used to be too stubborn to listen, I am listening closely now. My body no longer cares about what is expected of me by society, about how my bills can’t get paid while I’m trying to prioritize my health or about any obligations or guilt I feel toward my job. I am no longer in control of this body (was I ever?); it is in control of me.

My sense is that many of our bodies are reaching this point. A year-plus of pandemic living has revealed just how much our bodies can bear and the end of what we can bear no longer. People are tired, and our bodies will not be forced against their wills. We are all long overdue for a transformation of our working conditions, and our bodies know this. Your body might not have reached outright mutiny the way mine has, but it will — give it time. It has become an essential part of my thoughts to find a way out of this way of working because working like this will literally kill me if I don’t. Becoming disabled by the world is radicalizing, and I already thought I was pretty radical.

Perhaps if you take all these things together — the COVID, the mutual aid, the community care, the body trust, and the urgent need to divorce our health and living from our ability to work — what you get is what disability justice movement has been trying to tell us forever: our bodies are the site of that we carry. As Aurora Levins Morales puts it in Kindling: Writings on the Body, “What our bodies require in order to thrive, is what the world requires. If there is a map to get there, it can be found in the atlas of our skin and bone and blood, in the tracks of neurotransmitters and antibodies.” Looking forward to the world we are shaping (hat-tip to adrienne maree brown) beyond the pandemic looks pretty similar to the radical roots all bodies require for living.

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Rachel is a white, queer, fat, chronically ill annoyance hailing from Minneapolis, MN. She spends her time amplifying justice work and ranting about injustice on Twitter, sleeping a lot, talking to her three dogs, and doing harm reduction. Rachel has a background in housing and homelessness, abolition and mental health; she completed a Master's degree in social work in March 2020 and tries not to regret it. Currently, Rachel has been dealing with Long Covid, encouraging people to work less, and imagining a more creative, more communal future grounded in community care. Find her on Twitter @colocha_rachel or her houseplants on Instagram @colocha_rachel.

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5 Comments

  1. Rachel, I’m so glad you got help, and the article is really well written, but it really struck a nerve. I’ve been in a similar place for around six months, unable to walk, often get out of bed, or do much for myself – and it feels like mutual AID or maybe even friends are a fiction. I used to have a lot of friends, but maybe only three or four have stuck with me even enough to keep in touch with me – certainly no dinners, care packages or financial help, and I lost my job because of this, have no government help, and I’m relying on my exponentially mounting overdraft to pay rent.

    I feel bad hoping or expecting that of my friends but I wouldn’t have hesitated to do the same for them, and did. It breaks my heart to be so alone when I can barely cope – it seems like this illness has destroyed everything positive about my life, and hasn’t left me anything, even the people I love and I thought loved me.

  2. I can really relate to the feeling like if I were to start working again I would be causing harm to my bodymind. I got covid in march 2020, had acute long covid symptoms for 4 months and lesser symptoms but still struggling ever since. I know eventually I will have to work again but cant imagine it, certainly no more than part time. Being a part of community work has been my guiding light through this whole thing, I organize with my local chapter of black and pink and it’s the best thing to give me some purpose and support and hope.

  3. Good read. This line really spoke to me:
    “Mutual aid is mutual because, as much as I hate to admit it, we all need more support than we can provide ourselves.” To this day I still wrestle with self-reliance as a pipe dream. It is humbling, isn’t it, having to recognize one’s own limitations (continuously!) and I’m hoping to someday be at peace with knowing that. Someday I’ll get there.

    RE the mutiny of bodies
    One idea I’ve come to accept, with more than a little reluctance, is that our bodies are not simply vessels for our egos. We the ego may have a say as captain, but it’s the crew that holds the power to make our directives come true. And if we do not nourish the body properly nor respect the body’s limits, we should not be surprised when it no longer takes abuse with minimal complaint as usual. It can and will hold a captain hostage, if push comes to shove, and rightly so.

    I am learning to operate with compassion for that side of myself. That side which does not have a voice (in the way in which I am accustomed to thinking of voices) but will nonetheless speak up when it must. It deserves a competent captain who knows when to recognize ambition as folly, one who is willing to set aside arrogance in favor of the pragmatic (important though the goals at stake may be!) and I’m striving to live up to that for however many decades I’ve got left at the helm.

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