(No. 3) Words I'm not supposed to say: I'm still afraid
Reflections on living with a chronic illness and Covid-19
Hi friends- This is just a quick note to say that I’ve given my friends pseudonyms in this essay. Also, I write about chronic illness & Covid in this piece, too. It’s not too in depth or anything, but I know not everyone is in a place to read about these topics right now. Take care of yourselves.
The other Thursday, Belle invited me to a yoga class taught to live music. She knew the DJ, and I had taken classes from the instructor on Zoom in the early days of the pandemic, which I had recommended to Belle. The class was going to be held at an Oxford college not far from where I live, and on top of that, it was free (which is always a plus, let’s be honest). In short, it had everything I’d want from a class: live music, a good instructor, and even convenience.
Belle and I meet up most weeks, but for the past two years, our friendship has been mostly lived outdoors—usually on walks, discussing the latest episode of our favorite podcast. Before the pandemic, Rosie, Belle, and I would have weekly dinners together, alternating at whose place we dined. Given that we live in England, it probably comes as little surprise that we mostly ate indoors. It was nothing fancy, and we often ate while sitting on the floor trying not to spill our falafel on the already-stained carpet, but that was part of the charm of our get-togethers. When the pandemic hit and restrictions were announced, we continued our weekly tradition but sat outside, sometimes at a picnic table but often just on the grass.
And when the rain came in and the months got cooler, we set up umbrellas like you would a parasol at the beach, shielding us from storms rather than sunburn. Shivering and bundled up in blankets, we’d eat and chat until we were too soaked through to stay out any longer.
Although I was always the most worried about Covid in my friend group, in the early days, I wasn’t so alone in my caution. There was a lot more uncertainty about the virus, vaccines hadn’t yet been distributed, and rules were much stricter. Not only were we not allowed to gather indoors with people other than our housemates, but most people I knew were also terrified of isolating and being stuck to the confines of their room for two weeks. As unpleasant as it was to meet outdoors in British weather, there was an unspoken solidarity underlying these meetups. None of us wanted to catch the virus.
As time went on, however, and restrictions were eased and people vaccinated, something else changed, too. I found myself being invited to events that had been on pause for months—birthday parties, dinners, coffee catch-ups in local cafes and pubs. Not only would I decline these invitations, but I would also feel the need to apologize and explain that I wasn’t ready to socialize indoors unmasked yet. Given that my friends are understanding (that’s why they’re my friends, after all), it was never made into a big deal, and they would offer to do something with me that I felt comfortable with. But it was clear to me: hanging out outdoors was no longer a given; it was an accommodation that friends were willing to make for me, but not something they necessarily wanted for themselves anymore. A concession, rather than a we’re-in-the-trenches-together, type of solidarity.
Covid was still spreading at alarming rates, but people’s fear of the virus diminishing.
Mine, however, was not.
When I was 18, I was hospitalized with what turned out to be mononucleosis (known as glandular fever in the UK), caused by the Epstein-Barr virus. My case was severe; I had hepatitis, a swollen spleen, and ‘atypical’ symptoms that had stumped multiple teams of doctors. (Before my diagnosis, I was visited by different medical groups from various specialities all trying to work me out like I was a case on House.) I was hooked up to an anti-nausea drip, and I would beep for the nurses when I couldn’t withstand the discomfort, only for them to say that I couldn’t receive my next dose for another hour. At the time I was hospitalized, I had been healthy. I was in my first year of undergrad at NYU, I had no underlying health conditions, and I was a dancer.
I was told that it could take a while to recover and that in some people the virus can reactivate, but that most people feel okay in 6 months or so.
For me, that recovery didn’t happen.
I managed to finish my degree at NYU and later study at Oxford, but all the while, I was suffering from debilitating fatigue. Although I didn’t have the language for it at the time, I was dealing with something called post-exertional malaise (PEM), a type of delayed-onset fatigue after mental or physical exertion (for me, mostly physical). I had been told to exercise, but when I did so regularly, I was only able to do that; if I exercised that day, I wouldn’t be able to do any of my coursework in the evening or the following day. Exercise was also followed by extreme bloating; ironically, the more I exercised, the harder it was to fit into my clothes. I had weird neurological symptoms, too—numbness in my face and on the left side of my body, and one time a pupil that dilated fully and wouldn’t respond to light (that was a scary hospital visit—I was told I might have a brain tumor, but fortunately the scans were fine). I was always sick, catching whatever cold was going around and taking twice as long to recover as everyone else. Even when I wasn’t sick, I felt like I was coming down with something (sore throat, achey muscles). I visited countless doctors, who would take routine blood samples, only to say that everything looked fine and there was nothing they could do for me. Several doctors implied that it was probably just in my head (a kind of modern-day hysteria), and I was often evaluated for my mental health, despite me insisting that my symptoms started after contracting a virus. My zest for life was as strong as ever. I wanted to do everything—my degree, sports, hobbies, have friends, and the like—but I just couldn’t physically get through a normal day like everyone else my age. After spending a week in bed while recovering from a few days of rowing, I found myself in my GP’s office in Oxford, sobbing, saying that I shouldn’t have to choose between doing my laundry and going to the grocery store. I was in my mid-twenties.
Eventually I was sent to a specialist and diagnosed with ME/CFS. There’s a lot I want to say about ME/CFS, including my experience of that diagnosis process (spoiler: there was a lot of medical gaslighting and misogyny). But what I’ve been struggling to come to terms with lately isn’t my condition in and of itself. It’s the recognition that the shared feeling of vulnerability in the early days of the pandemic was only an illusion; we were never vulnerable in the same way.
And the gulf between our experiences of this pandemic is only widening.
I started this essay with Belle’s invitation to a yoga class. What I feel like people want me to reason is something like this: that not socializing indoors during the pandemic has taken its toll on my mental health, and that as resilient as I am, my mental health is not invincible either. I had to weigh my risks, consider my options. I decided to go to the yoga class, because my physical health is not the only thing at risk.
Maybe that kind of risk calculation resonates for some people. But for me it’s like weighing a bowling ball against a feather. The scale will always tip in favor of preserving my physical health. And it’s not like the two are unrelated—my mental health takes its lowest dips when I have fatigue flare-ups, too. It’s the days where I’m too tired to do the washing up or go for a walk that I sob myself to sleep, wondering how I’m ever going to have the energy to do my passion projects and earn a liveable salary. Some days I wonder how I can work at all, let alone pursue my passion projects and hobbies. Any illness or flare-up only reminds me how precarious my dreams are. As the mental toll has gotten weightier over the months, rather than tipping the scale the other direction, it has snapped the beam altogether.
(Don’t interrogate me on the physics of this metaphor.)
Just because restrictions are lifted, I’m vaccinated, and we no longer have to isolate, does not mean that I’m no longer afraid of the virus. If anything, I’m more afraid now because of how easy-going everyone is. Testing is no longer free and widespread, there are no restrictions, and the only people I know who wear masks besides those with chronic health conditions are those who know someone vulnerable. I’m more likely to catch Covid now than ever. But my place of work wants us back in the office, I’m not disabled ‘enough’ to qualify for benefits, doctors still have no idea how to treat my condition, and I still have to advocate for myself to get on vaccine priority lists. Socially, it’s tough, too. At work events, I’m the one freak in the room wearing a mask, even though I’m based in a population health department. I feel like I can only decline social invitations if I invent an excuse.
You’re still afraid of a virus, Rachel? Really?
That’s the voice I imagine if I tell people the truth. If nothing else, I hope the depth of my fear conveys how seriously ME/CFS should be taken, as well as any other post-viral illnesses.
I’m also afraid to share another truth, especially after everything I’ve said thus far: I did go to the yoga class with Belle in the end. It was my first unmasked, indoor activity in… I actually can’t recall how many months. Years? My worry is that others will think that I’m now willing to accept any invitation, or that I’ve finally ‘come around.’ Or that Covid and other viruses shouldn’t be taken seriously. Or that my actions will feed into the narrative that the pandemic is over, when for some of us, it’s very much present. I fear that if I want to do something for myself, like go to a yoga class, that I’ll be expected to put myself in risky, unmasked situations that I’m not up for (work events, for example). After all, if you’re willing to do a hobby unmasked, why can’t we expect you to work under similar conditions? This little capitalist whisper haunts me. It’s not unlike the normal ME/CFS voices I hear, too. Oh, if you’re willing to expend energy in a yoga class, why can’t we expect two more hours of work from you?
The answer is simple.
Because no one is entitled to my life but me.
As I lie on my mat in our final resting pose, I realize that I’ve been in this room before. During my DPhil, I gave a few talks about my research here for a gender studies symposium. I recall a breakdown I once had to my parents about wanting to quit my degree; my supervisor retired and said I was taking too long to finish. I was failing to live up to the timeline and expectations that seemed to work fine for everyone else.
My breaths are shallow now, my ribcage rising and falling only just.
My supervisor was wrong, of course. I was always on my own timeline, and I finished when I was able. I didn’t even receive any corrections on my final thesis and viva, despite writing most of it without supervision, and my graduation is booked for this summer.
The yoga instructor brings our attention to the music and reminds us that we can stay for as long as we want. This room, once a symbol of my inability to keep up with academic (ableist) expectations, is now a place where I’m invited to choose my next move. I inhale and imagine the earth consuming me, as though this pose is my final rest. No mat to roll up at the end of class.
But I can hear the birds chirping and people playing ping pong somewhere nearby.
I have home-cooked pasta to eat when I get back to the flat, and a Formula 1 race to watch this weekend.
For now, the ground is propping me up. And when I feel my tears escape down my cheek, I’m reminded that I may not be invincible, but I am alive.
Thank you.
It means a lot if you made it to the end of this essay. I had a pretty bad flare-up last week and spent much of it in bed, curtains closed to block out the light (light sensitivity is something that I deal with when I’m having a bit of a flare). I haven’t been able to comb through this essay and edit/rewrite as I’d like, so I’ll consider it a draft for when I have the energy to craft it into something more polished. Also, I have this fear that I’ll be alienating all of my friends/readers with this essay because I’m writing about this disconnect I’ve been feeling, and I don’t have the energy to phrase/frame things in the most nuanced of ways. So this is just a reminder that I love you guys, and I hope that love still comes through. I know everyone has their own story and has had to make tough decisions throughout the pandemic, and I don’t want my narrative and choices to discredit anyone else’s.
Anyway, enough blabbing. Comments are on.
x Rachel
This is such a thoughtful piece. I believe you're a voice for many, many people -- and not just those who have a chronic or acute health condition, or even someone like me who doesn't but is over age 60. We can't forget the lessons learned during the pandemic, although it seems like many people and government leaders already have.
What you’ve written here is thoughtful and very relatable. This time of transition has been awkward, uncertain and continued to be lonely (at least for me). Living with a chronic illness and the uncertainty of how I’ll be affected by the virus drives many of my daily decisions. This adds to the exhaustion. I really appreciate the teaspoon analogy you shared. I often think of chronic pain/illness as a jar being filled up throughout the day. The teaspoons sum up my days perfectly! At the end of the day, hearing you’re not alone and that someone understands is a gift so thanks, Rachel!