Drag and circus artist Themme Fatale (they/them), 33, was an athlete and performer at the top of their game when a COVID infection changed their life. Editorial director Reina Sultan spoke to them about their initial infection, the post-viral conditions they live with today, and their message for readers who might not know much about Long COVID or how it develops.

In 2022, I was an internationally touring professional circus artist, in Scotland for the Edinburgh Festival Fringe. I was an aerialist at peak fitness, doing trapeze. The cast picked up COVID. The acute infection itself was bad, but not the worst sickness I’d ever had in my life. When I recovered, we had to get back into the show. I tried to have a less intense show and didn’t go back to any of my aerial acts, but getting back on stage is a lot, especially knowing you’re supposed to take it easy post-infection.

I found I was very fatigued and would get breathless easily in the couple of weeks after the acute stage, which I thought would just take a while to get over. But these episodes kept happening and escalating. I’d be walking down the street and then suddenly, I found myself sitting in the gutter on the footpath because my heart was just going crazy. I’d randomly get really hot, sweaty, dizzy, and breathless. I was getting a lot of allergy-type symptoms. I was waking up in the middle of the night with a racing heart. At the same time, I was trying to return to training, but I would constantly get flu-like symptoms afterward.

After about three months of this, plus getting shingles, cold sores, and one side of my face going numb, I went to the doctor. I was also doing my own research—which I felt confident with due to my strong science background as a lab researcher. I started seeing stuff about Long COVID a bit more and how common a lot of my problems were post-COVID. My doctor at the time was supportive, but not an expert, so she gave me a bunch of referrals to different doctors, as well as the publicly funded Long COVID clinic—which took me a year to get into and lost funding shortly after my only visit.

As I was waiting for the specialist appointments to come up, I would also end up in the emergency department a lot. Before one show in particular, I couldn’t stand up, because my heart was going so fast. I had crippling chest pain and I couldn’t breathe very well. I was going to go on stage, but our stage manager’s father was a doctor and he was in the audience and he was like, “No, you’re getting in an ambulance and you’re going to the hospital right now.” On the way to the hospital, the paramedics gave me a bunch of different medications, but I can’t remember what, because I was in and out of consciousness. When I got to the hospital, though, the nurses put me in a chair, not a bed, and gave me Panadol (acetaminophen) and sent me home. I don’t even blame the individual nurses, because our healthcare system is not doing well and there’s a lack of education, funding, etc.

Luckily, the cardiologist I eventually got in with is awesome. Unfortunately, I have to see her privately, which means I had to pay $500 out of pocket. She was very aware of medical misogyny and basically said that if I was a cis man, I’d have had the tests (echocardiogram, tilt table test, and stress test) she ended up running done for free at the hospital when I’d gone in. But through these tests, they figured out I have POTS and an arrhythmia. And so I’m on a couple of different forms of medication now, and of all of my issues, that’s the most well-managed.

My other symptoms point to ME/CFS. During one of my many visits to the emergency room, one of the doctors overheard me speaking about my issues and recommended I go to the Zebras Clinic—which is also private and specializes in POTS, EDS, fibromyalgia, and ME/CFS. So I’ve been a few times but again, it’s not publically funded so it’s not totally accessible. Between that and a lack of research/clinical testing, my ME/CFS has gotten worse. The only stability I’ve had in my life with regards to that is now that I do a lot less. My life is just so much smaller. I don’t work as much, I do a lot of things from my bed. I receive a lot of help from my partner and from friends in terms of basic things. I have mates that come over and just do the dishes. On some days, I can do the dishes or I can shower or I can send a couple emails that I need to send, but not all three. Or I can do the food shopping for dinner or I can make dinner, but not both.

I’m not training anymore, I don’t do trapeze anymore. I found that when I was still trying to train, it would send me into a flare which would make me so fatigued that it felt like I’d been poisoned. I would have tremors throughout my entire body and not be able to form words. There were times I thought that I was going to die and the only reason I’m not still in that place or worse is because I just stopped doing things, and so that maintains a certain quality of life, in terms of not feeling actively poisoned, but it’s not enough to actually get me any functionality.

So now, I’m just trying to warn other people that this is a possibility of what can happen when you get COVID. What happened to me isn’t rare. We know that there’s a one-in-10 chance of long-term complications with each infection, and that those chances are cumulative. I think that, when people talk about pre-existing conditions, it’s really easy for people to imagine somebody else, right? Getting COVID even once means that you now are somebody with a pre-existing condition. The pre-existing conditions that I had was being bendy (hEDS), and I didn’t think about that as something that was going to ruin my life in this way. I don’t want to see this happen to other people and I do believe that we’re going to get somewhere in terms of either a sterilizing nasal vaccine or treatment. So, why not just protect yourself until we have those things? This is preventable and it’s worth avoiding. Your health is worth protecting.