Two queer millennials with COVID-19 speak out on their experiences

For the ladies in my life, March 10 was a typical Tuesday in the pre-quarantined world. Though, funnily enough, our activities sound like scenes from The L Word if it was based in New York City. It had started to feel like Spring as my friends and I traversed to opposite corners of the city for the night. In Park Slope, two friends and I met up for a lesbian comedy night while my girlfriend and her friend gathered at an apartment in West Harlem for a meeting about their queer feminist wellness collective, Body Politic. 

Tuesday, March 10 was also the day the person closest to me, my girlfriend, fell ill from coronavirus. Though, at the time, we didn’t know it. That night, after the comedy show, I got a text from my girlfriend, Sabrina—she said she started to feel sick. It didn’t feel possible that she had this new illness. It had to be a cold, or at worst it was the regular flu. I was worried but simply instructed her to go home and get a good night’s sleep. Sabrina was even less concerned and even worked from home the following day.

But three days later Fiona, the friend she had spent that Tuesday night with, rushed to the ER with severe shortness of breath. Twenty-four hours later, Fiona tested positive for COVID-19 and it became more than likely that Sabrina had coronavirus, too.

Although we had heard that young people would survive if afflicted, it sure didn’t seem like it. News of rising global death tolls and real life hospital horror stories were impossible to ignore as we scrolled social media. There was a morning a week into her illness when Sabrina forgot to text me when she woke up. My roommates saw me breakdown crying in our living room as I frantically called and FaceTimed her. She didn’t pick up. I feared the worst. Finally, she texted me back, apologizing, saying she had been on a work call. Even though she was okay and has since—mostly—recovered from all symptoms, I knew I owed her more than just my concern. I needed to help her more, to ensure she would be okay everyday moving forward. 

I’m heartbroken for the thousands of families that are grieving the loss of loved ones and devastated knowing more people will die. I’m still scared of this virus: how it has damaged Sabrina and Fiona’s lungs long-term, how it would affect my sister who is diabetic. But what I know is that for now, I am okay, I am healthy, and I have a platform to help share stories of those who are fighting for their lives and hoping to help others. 

Fiona in the hospital after testing positive for COVID-19, March 2020.

Sabrina and Fiona spend most of their extracurricular time creating inclusive wellness spaces for women and queer people. They were meeting about this very work when they spread the virus to each other. I thought it was important that at least the people in our community—fellow queer people, 20-something Brooklynites, whoever—hear them out on their experiences with COVID-19, what feminist wellness looks like, and what it means to truly be compassionate during this difficult time.

See below for their stories. Some responses have been edited for length and clarity.

Walk me through how you realized you had COVID-19. What were your symptoms? How long did they last?

Sabrina: I got sick on the night of Tuesday, March 10 but when I think about it, I was feeling exceptionally tired a day or two before. Fiona and I were sitting together on her couch, when really suddenly I started to feel my throat getting sore and felt a fog come over me. I’d never felt myself get sick so quickly, one moment to another. For about two weeks, I cycled through different symptoms, on and off: shortness of breath, complete loss of taste and smell, loss of appetite, cough, vomiting, aches, and chills. Symptoms changed every single day. While most of those really disruptive symptoms are gone, I’m still experiencing shortness of breath, painful breathing, fogginess, and fatigue a full month later. 

Fiona: I got sick on Friday, March 13. It started with a headache and a fever, and while I feared the worst, I tried to stay calm and tell myself it could be anything, not necessarily coronavirus. When I woke up the next morning with a cough, it started to become hard to ignore the signs. My symptoms actually subsided slightly the following day (Sunday), and I was hopeful, but then got worse on Sunday night when I woke up with chills and vomiting and what I now recognize as shortness of breath. The shortness of breath became acute by Monday evening – I couldn’t walk, talk, or eat without struggling to breath. Unless I was lying still in my bed focusing on my breath, breathing was extremely hard. The fever and severe shortness of breath disappeared by my last day in the hospital (3/18), but I’m still experiencing symptoms today – four weeks after I initially became sick.

How are you both feeling now? 

Fiona: I’m doing okay, but recovery from coronavirus is extremely difficult and slow, even for people with mild cases. My case obviously was a bit more serious, because I needed hospitalization, but I wasn’t on a ventilator or in the ICU, and I’m still experiencing symptoms almost four weeks after getting sick. The symptoms cycle on and off and new symptoms have developed since that first week in the hospital. I had bad GI issues for a week after leaving the hospital, and while those have subsided, I’ve since had sinus pressure, sore throat, on and off congestion, intense headaches, fatigue, and brain fog. Some days are better than others, and the general trend is upward, but I’m still not feeling well. I’ve felt depressed at the long recovery and anxious about relapsing into old symptoms. I’ve also had nightmares about not being able to breath or getting re-infected. I’m guessing I’m still mentally processing everything I went through.

Sabrina: So much better than those few two weeks but definitely not “recovered.” The tricky thing is, I feel like the recovery process is a lot longer and more complicated than we’ve seen written about in many places. I had three days of feeling practically symptom free after the two weeks and then have since had some symptoms return, like the shortness of breath/painful breathing which is really holding on. It makes simple tasks hard like walking around the house or even talking for prolonged periods. I also just have a general sense of fatigue and fogginess everyday that can make working difficult. I don’t have a clear sense of how long this will last and when I’ll be able to be more functional and active again. 

Fiona, you’ve spent the last few weeks writing op-eds and appearing in media to talk about your experience with COVID-19. Why was telling your story through the media so important?

Fiona: Since I got sick pretty early on, I felt very alone throughout much of the process. When I woke up on that first Saturday morning of being ill and opened up Instagram, all I saw were memes about being bored during quarantine and advice on how not to get sick. Even weeks later, I’m still not seeing much online content that considers that some readers may actually have coronavirus. I wanted to share my story because I wanted other infected young people to realize they weren’t alone. 

Sabrina and I have since started an online support group for people experiencing symptoms, or recovering from COVID-19, and it’s been hugely helpful to connect. I wrote my first op-ed for the New York Times about my trip to the hospital because it was clear that people our age didn’t think they could get seriously ill from coronavirus. Since sharing my story, I’ve heard from a lot of young people who are being very vulnerable about previously not understanding the seriousness of this crisis. I think it’s really brave to admit that you might not have done everything you should have – after all, we have all had at least one moment where we were in denial about how bad this would get – and sometimes the shame around those prior actions can prevent us course correcting. A lot of people in their 20’s are also uninsured, which means that even if you contract and survive COVID-19, it can still severely disrupt your life financially. I think we’re a generation that has the potential to prove what social responsibility really looks like. Staying home right now is a privilege, and one we need to exercise to help keep essential workers safe.

Ironically, you two were meeting together about your wellness collective, Body Politic, when you likely spread the coronavirus from one of you to the other. What was that night’s meeting about? What work do you normally do together with Body Politic?

Fiona: The irony is absolutely not lost on us! We launched Body Politic in 2018 with IRL event programming because we saw a need in the community for more in-person interaction and community-building. We wanted more queer spaces to exist outside of bar culture, and we wanted there to be more inclusive and accessible wellness offerings. Since then, we’ve expanded our online content via our publication, Body Type – where we cover the intersections of wellness and politics through a queer feminist lens. I’m really thankful we’ve spent time developing that online community, because our current crisis means we won’t be able to throw live events for a long time. On the night we got sick, we were actually FaceTiming with team members in other parts of the country who have been helping us prepare to significantly fundraise for Body Politic. One result of this crisis has been our having to put those fundraising efforts on hold. 

How is Body Politic adjusting to community building during the coronavirus outbreak?

Fiona: Because 50% of our core team was taken out by coronavirus, we had to pause everything for two weeks. This was really hard, because we knew there was a high demand for the exact issues and content we address. Luckily, everyone on our team is slowly recovering. For now, we’re focusing on our publication, Body Type, where we’ve been sharing personal essays and advice about the current crisis. We’re also looking at relaunching an online version of our book club, which was a big hit in the first year we operated. Personally, I’ve been putting a lot of time into growing the Body Politic COVID-19 virtual support group, and sharing resources with those folks – since they’re all experiencing symptoms and can really benefit from additional support.

Sabrina: As soon as we got sick, we noticed a really deafening silence in speaking to people who were sick or recovering on social media. We need to be creating content that was not only inclusive of those people but directly addresses the experience. The basis of Body Politic is merging the personal and political, and this moment is highlighting all of the inequities in health and wellness that have always existed in really stark and horrifying ways. We want to cover those issues and give space to those most affected. 

What is something you wish people knew about those suffering with coronavirus?

Sabrina: It’s a complicated virus and doesn’t have a one size fits all experience at all. Symptoms and severity are really different for different people, in unexpected ways. I wish people were a bit more understanding of that and less prescriptive. I can’t tell you how many times people said to me “well, you’re experiencing this xyz symptom so you don’t have it.” I understand it’s usually a way to assuage people’s own fears, but it can feel really minimizing and cause people to question their own sickness and bodies. And this can be dangerous because then people might not take potentially harmful symptoms seriously and either not be careful about spreading or not be ready if their health declines dramatically.

Fiona: We’re often just as confused as you are. Just because we’ve had coronavirus doesn’t mean we are medical encyclopedias on the illness. The confusion everyone is feeling is amplified for people experiencing symptoms. Sabrina and I are actually working on an article for Body Type on how to support friends with coronavirus – so be on the lookout for that in the coming week!

What is your advice to people who have tested positive for or think they might have COVID-19?

Fiona: Sabrina wrote a really helpful piece on Body Type on riding out the virus at home, if you live alone. I would suggest getting in touch with a doctor early, if you can. The symptoms can escalate quickly and it’s better not to be figuring out your MyChart password when you can barely breath – I know from experience! Also, breathlessness can make it difficult to speak, so prepare accordingly – you may need a friend to call your doctor for you. Finally, infected patients should not expect recovery to be quick or linear. One of the biggest misconceptions right now seems to be that patients beat or survive the virus and are fine. I’m talking to people in the support group who are still running fevers after 2-4 weeks. Try to get as much rest as possible in the weeks after contracting the virus. If possible, make family, friends, and employers aware that it may take a very long time for you to be functioning at full capacity, and that you can benefit from additional emotional and financial support even past the point of severe symptoms.

You both identify as members of the LGBTQ community. What do you think our community needs right now? How can those of us who are healthy and in safe situations help those who are hurting?

Sabrina: As members of the queer community, we want to create resources and spaces that foster a sense of togetherness. Our COVID-19 support group has been great for that and we hope to find other ways to do so. We also want to create content that is both queer and COVID-19 inclusive, giving a platform to people in the LGTBQ community to share their COVID-19 experiences. There is strength in knowing there are others out there in similar situations to you; stuck in a home that is not queer-affirming, suffering from heightened mental issues and disphoria, sick and without resources to properly care for themselves, etc. Sharing our stories can help create a sense of community and hopefully create solutions for some of the problems the community is specifically facing right now. 

Fiona: Obviously there are some clear parallels between this pandemic and the AIDS crisis, and I’ve seen some interesting coverage of how this situation is especially intense for people who lived through that era. We can’t forget that medical bias still exists, and PoC, LGBTQ+ folks, fat and plus sized people, women, and people with disabilities are likely going to be treated differently if we do have to seek medical care. That’s a reality that’s always existed and isn’t changing now. 

For just a little levity, what is the best piece of LGBTQ content you’ve consumed during your recovery?

Sabrina: Netflix has really come through for me in this time with a fun slate of queer shows all coming out the weeks I was sickest. Feel Good, I’m Not Okay With This, Unstoppable which is a great Mexican show, and Elite Season 3 which was incredible and wild. All very different and queer and great. 

Fiona: When I was really sick, I watched But I’m a Cheerleader, and the last scene of Natasha Lyonne and Clea DuVall in the backseat of that truck holding hands truly made me sob – but in a good way. I sent a screenshot to my partner who was isolating in the other room with the caption: “us post-quarantine!” After the doctors told us we could re-integrate into the same living space, we’ve been revisiting some of our favorite old Buffy episodes – nothing like lesbian witch content to get you through tough times! I’ll also say that there are a few accounts on Instagram that have been bringing me joy, notably @adameli and @iamelsz – they’ve both been posting content that doesn’t ignore the current situation, but also is very gentle and kind. It makes me feel seen and held. 

What is one outcome you hope to see come out of this crisis?

Fiona: Medicare for all! I’m no stranger to the horrific details of our healthcare system – I’ve been responsible for my own health insurance since I graduated college, I’ve been on medicaid, and I currently pay for insurance through the NY State Marketplace. This crisis is only making clearer how completely messed up our healthcare system and infrastructure are. I’m not incredibly hopeful that things will change given the two candidates running for president right now, but I’d like to think Americans will no longer stand for this absurd system.

Sabrina: There are so many things that have to change as a result of this worldwide crisis, but I think the main one, especially in the U.S., is increased protection for the lives of all marginalized peoples. I don’t know exactly how, if, and what that change will be but it needs to be radical. The virus is infecting people of all kinds, but as we’ve already and unsurprisingly seen not everyone is getting access to the same healthcare and resources. When we’re on the other end of this, we need to take stock of what was both done wrong in handling this but also what were the structures and systems already in place that directly caused marginalized people to suffer and die so much more than others. We’ll need to take the outcomes of this seriously and change our systems in a dramatic way to protect the health and safety of all bodies. We need to learn that the personal is political. 

Clare Kenny is the Director of Youth Engagement at GLAAD. She leads GLAAD’s Campus Ambassador Program, Rising Stars Program, and Amp digital platform. Clare is a graduate of Skidmore College.