This essay is part of the Color of Long COVID series, supported by the Disability Visibility Project.
Editor’s note: This essay was written and edited through voice notes by and phone calls with Jermaine.
My life before Long COVID was very busy. I was in college, partying a lot and working as an artist and activist. I didn’t make time to rest, and it caused me to burn out. I tried to do everything at once and became overwhelmed.
When I developed Long COVID in November 2021, I had to learn to slow down and take my time. I was forced to be mindful of my energy and had to admit when tasks were too much for me. I also learned to rest, pace, and eat better, and I learned to say no to things that were not good for me.
Long COVID taught me to just breathe, have patience, and understand what I can and cannot do.
Long COVID taught me to just breathe, have patience, and understand what I can and cannot do.
I also developed a skin condition known as hidradenitis suppurativa (HS) during my time with Long COVID. My first year with the condition, I was in so much pain I couldn’t get out of bed, and I had to get a hospital bed to make my everyday life more bearable. I had flare-ups that were painful, sometimes I couldn’t even speak.
My healthcare providers and I tried different treatments to get my pain under control. I started doing infusions that made my pain more manageable and reduced my symptoms of pain and sores. On top of HS and Long COVID, I also had to manage cerebral palsy, which I had prior to getting COVID-19. Every day, I had to manage spasms and chronic pain.
It wasn’t easy, and it still isn’t.
My body has changed because of my chronic illness: in addition to HS symptoms, I had surgeries and spent time in rehabilitation. I now have to manage my conditions with daily treatments.
Navigating the medical system with these conditions has been a frustrating journey I will never forget because of the inequities that I face as a disabled person. I’ve learned to advocate for myself in a way that’s respectful and manageable, but also how to firmly ask for my needs. For instance, since getting Long COVID, I often have to ask for people to wear masks to protect me from COVID-19 and other pathogens.
In rehab and different hospitals, I’ve learned how to ask doctors for my specific needs in terms of my care, asking them for wound care supplies and dietary needs. I know what happens to my body if my conditions flare, and that awareness in my body helps me navigate it. I’m now much better at pacing myself and navigating a daily practice of rest and self-care.
One particularly memorable time in my journey with Long COVID happened when I was able to speak at the National Institutes of Health (NIH) last fall during the RECOVER-Treating Long COVID meeting. I shared my story of navigating different disabilities and my journey with chronic illness. I told them how COVID-19 made my health worse and made me feel invisible. I wanted them to know the struggles I had experienced in finding medical care and support. I was also able to hear stories from other advocates and know I wasn’t alone as a disabled person with Long COVID.
I’m now working to promote a short film called Jermaine Greaves, directed by Gil Rios. The film discusses my life with chronic illness, being in the hospital, graduating from college, working with Meighan Stone of the Long COVID Campaign, and being featured by PBS in June 2024 for a discussion on Long COVID and disability.
Gil and I are touring with the film to show it to different audiences. We have already won one award for the film and hope to get more recognition in the 2025–2026 season. I’m currently running a fundraiser for the film and am planning on traveling across the United States and the world to show this film and raise awareness about Long COVID and disability access.
As I continue my journey with Long COVID, I’ve learned that I don’t have to move at everybody else’s pace.
We are constantly asked to produce at a high level — I don’t subscribe to that anymore. I do what I can, I pace myself, and I encourage everybody to do the same. Take your time, be patient, and allow yourself grace to go at your own pace.
I do what I can, I pace myself, and I encourage everybody to do the same. Take your time, be patient, and allow yourself grace to go at your own pace.
I also believe that in the current climate, the disabled community must stand together. We need mutual aid, community efforts, and standing in the gaps for one another. As we continue to grow in society, we are fighting a good fight together. Let’s hold each other up and never give up on each other’s greatness.
I want to let other disabled people know: You do not have to meet able-bodied benchmarks to succeed in society. Go at your own pace. Rest. Ask for your accommodations and needs, and do not feel obligated to meet a benchmark. Your awareness of yourself is way more important than trying to meet different goals at once.
Jermaine Greaves is a writer, disability advocate, actor, dancer, and content creator based in New York. He is the subject of the film Jermaine Greaves, directed by Gil Rios.
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