“I’m 26. I don’t have any prior autoimmune or respiratory conditions. I work out six times a week and abstain from cigarettes. I thought my role in the current health crisis would be as an ally to the elderly and compromised. Then, I was hospitalized for COVID-19.”

NEW YORK, NEW YORK: I’m 26. I don’t have any prior autoimmune or respiratory conditions. I work out six times a week and abstain from cigarettes. I thought my role in the current health crisis would be as an ally to the elderly and compromised. Then, I was hospitalized for COVID-19 in early March.

I think it’s important that people understand that my story is in many ways a best-case scenario. I didn’t experience significant medical gaslighting or medical bias. I actually wore my Yale sweatshirt to the hospital because I was afraid no one would take me seriously as a young person. I was believed, admitted to the hospital, and given a COVID test when many others weren’t. Even so, it took until June for me to feel almost normal.

I work for a media startup called Body Politic, a queer feminist wellness collective that I co-founded in 2018. My friend and creative director Sabrina and I held one last in-person meeting on March 10. I believe I got the virus from her. The silver lining was that in those first few weeks of being sick we had each other.

We had each other (via text) when breathing made speaking difficult. When testing was unavailable. When peers and family members questioned the seriousness of this crisis. When I felt waves of intense fatigue, headache, and eye pain. We wanted to extend that friendship and community to other COVID patients, so through Body Politic, we created an online support group on Slack.

We started in late March, with a small group of about 30 members, at a time when no one was talking about long-haulers. Then, in early April I published a piece in The New York Times about my experience of having lingering, morphing, and relapsing symptoms, and after that, 2,000 people signed up for the group overnight. Since then, over 18,000 people have signed up to be part of our group and larger network, and we currently have about 9,000 active members on Slack.

I remember a day in late April when I did Instagram live with a well-known, media outlet. I had thought that I would be able to handle it, but after an hour or two of talking, I crashed. I couldn’t look at a screen at all. My light sensitivity was so intense that I couldn’t even watch TV, but I also couldn’t fall asleep. I remember just lying on my back with all the shades drawn but my eyes open because I felt dizzy when I closed my eyes and thought: This is ridiculous.

Later that night I logged onto our COVID support group, which was only about a month old. I came across a post by a patient who had tried to do some yard work but ended up feeling very sick afterward. She shared her frustration at not being able to garden like she used to and talked about how she was lying on her apartment floor crying. Then, she said she realized, “Even though this is distressing, my body is doing what it thinks it needs to right now to heal. This is all part of a process. Adding my anxiety to it is just going to make it harder for myself.”

Her post was beautifully written. When I read it, it felt like it was written for me specifically. I found it at the perfect time.

Prior to having COVID, my coping mechanisms were exercise and meditation. When I got sick, one of my biggest sources of panic was that I lost those tools. I was way too sick to exercise. My breathing was very strained at the beginning, so the idea of meditating was off the table. I felt trapped. The only thing that worked was telling myself every day, “One day at a time.”

There is no countdown clock where one day I will wake up and every last symptom will be gone. Just like there is no countdown clock where we will wake up tomorrow and everything will be back to normal like it was before the pandemic.

We imagine the support group will be needed for years because the aftereffects of this pandemic will likely be felt for years. We are working on making our group sustainable, and we’re seeking funding so we can continue to scale. 

Our group continues to grow, and every day I hear from countless patients, caregivers, and healthcare workers who need support. Many are 20-somethings like us who live alone, or far away from family. We hope the group can continue to be a place for emotional support, but also to push the mainstream media narrative to include issues that it hasn’t. To include more diverse patient stories, like the impact of systemic racism on long COVID patients of color who seek care, and the stories of patients who weren’t able to access testing.

Part of the reason I did recover is due to the fact that I had the privilege to live off of savings for a couple of months, take time off of most work, sleep 14 hours a night and take a 2-hour nap every day. But if someone can’t get tested, can’t access medical care, and can’t get a diagnosis, they can’t access paid time off work or disability leave. It’s a huge problem.

As the group continues, we still aim to provide emotional support, but we increasingly see ourselves engaging with patient advocacy. Our patient-led research team has created two surveys and has been recognized by the NIH. We believe patients need a seat at the table at health agencies, at the White House, and more. We are already in conversations with the NIH and CDC about how we can make sure research into long COVID happens, and that such research processes consider the diverse array of patient experiences. Ultimately, we see our group as a headquarters for the emerging COVID patient advocacy movement.

Learn more about the Body Politic COVID-19 Support Group.

SYMPTOMS: Fever, shortness of breath, fatigue, headache, eye pain, light sensitivity, loss of sense of smell, GI issues, rashes/hives/dermatological issues

Fiona is a 26-year-old independent journalist, TV producer, and media consultant in New York, New York. She founded the media startup Body Politic and co-founded the Body Politic online support group for COVID-19 patients and survivors.