Interview with Freya Rose: Long Covid and Queer Perspectives on Health

When long COVID abruptly reshaped her life, queer, Berlin-based relation counselor Freya Rose found herself navigating illness, disability, daily life and community in new ways. In this conversation with Vic Atanasov (PinkDot), she reflects on care, trauma, and what a safer future could look like for all of us.

Vic: First of all, could you introduce yourself. Who are you and how long has COVID shaped your life so far?

My name is Freya Rose. I developed long COVID in 2023 after my second infection with COVID. My life completely changed. I was having extended bouts of fatigue, having real issues with my day-to-day, just taking care of myself, being able to wash the dishes or cook for myself, and not being able to exercise or often having difficulty even walking up stairs or things like this. I used to really love nightlife, I was also very fit and into sports and jogging, now I’m not really able to do those things.

When you become suddenly disabled, that has a big psychological impact too. But on top of this I think that long COVID itself has a direct impact on the brain and nervous system, in a way that caused me to experience a lot of really extreme kinds of psychiatric distress, like experiences of depression, anxiety, even paranoia, that I'd never experienced before in my life.

Fortunately, I'm doing much better now. The first nine months was the worst of it. Really, really bad. After that I was at least able to start working again after. But for eight or nine months, I was off work. And since I'm a freelancer, that also meant that I didn't have any money coming in. I was lucky I had some savings, but I also took on some debt during that period. So there's a lot of big issues that came from long COVID for me. And they haven’t gone away. I have accepted now that I will never return to the level of health I had before Covid, although I am content with where I am now. Health just looks different for me now.

What is long COVID actually?

The medical community is still very much undecided about what it is. What we know is that the novel Coronavirus attacks every organ and system in your body, your heart, brain, kidneys, lungs, nervous system, immune system… and so the range of persistent symptoms you can have afterwards is huge. You might notice you get colds or flu or bacterial infections more often than you used to. Or you might have worse mood or sleep, more mental health issues, heart issues, worse memory, or be less energetic than you used to. All of these things can be because of Covid. And, the more times you get infected with Covid, the higher your risk of complications like long Covid.

I think the most common presentation of long COVID is that at some point after a COVID infection, you experience unusual symptoms that you didn't have before, or like the exacerbation of another condition or the sudden emergence of a new condition. What a lot of people also don't know is that it doesn't have to happen immediately after you got your COVID infection, you might recover in a normal way and then one or two or even six months later you have new issues. My most debilitating symptom, which is shared with ME/CFS and other post-viral chronic conditions, is post-exertion malaise, which where you get crippling fatigue after you exert yourself physically or cognitively, making you unable to do anything. I can’t even describe how horrible this feeling is, it often made me feel like life was not worth living or that I could not go on. I’m so grateful that I experience that less now.

Is there an official diagnosis of long COVID?

Yeah. There is an official diagnosis that you can get. But at the moment, the way that most doctors diagnose it is just through differential diagnosis, which means the exclusion of everything else. So if you go in and say like, I'm having fatigue and brain fog and like memory loss and I feel depressed, first they'll check if you have something's wrong with your lungs and if something's wrong with your heart. They'll do blood tests and check if you have an iron deficiency and, you know, they'll check for all the different other things it could be. And if it's none of those things and you had a COVID infection at some point, then they'll be like, oh, this is probably long COVID.

You try to live a COVID safe lifestyle. What does it include for you?

COVID safety is a spectrum. I'm not someone who will probably die if I get another COVID infection, but there are a lot of people who are in that category. So for some people, COVID safety means minimising risk at every possible point, always masking, PCR testing all your close contacts, etc. That's one end of the spectrum.

I'm sort of a bit more in the middle of that spectrum. I wear a mask on public transport, at some social events, definitely in the supermarket, the pharmacy. I talk to friends before they come over about how their health is doing, where they have been lately.  Sometimes we might all take a rapid test. I do have a PCR machine that I use at-home. But I take calculated risks because I have the privilege of being able to take those risks, I guess. A lot of disabled and immunocompromised people don't. The thing that I would really like people to understand about COVID safety is that if everyone made just a little bit more effort, then the world would be so much safer for all of us.

I think the average person has had this kind of extreme experience where in 2020 they experienced lockdown, and it was horrible, and they’re traumatised. And then they've flipped from that to being like, I'm not going to engage or think at all about this anymore. So, you might just socialise anyway when you feel a bit sick, never mask in any situation and take no precautions. These behaviours are very destructive. 

I really don't want to judge or shame anyone.  But for me, I just feel like there are some small things that you can do that would make both yourself and your friends and your community, especially vulnerable people in your community, so much safer. 

I was also wondering if there's a link between long COVID and ableism. Anti-ableist movements are critisizing that we individualize the problems and make disabled or sick persons responsible to adapt to the ableist society – and to ignore the structural discrimination. I was wondering if it's the same with long COVID. That we should shift the perspectives: not making you adapt to the society but to change society to adapt to your needs and to make the world COVID safer.

Yeah, absolutely. And I'll fully acknowledge that before my experience with long COVID, I was basically not taking any precautions. I was traumatised by lockdowns. I wanted to move on with my life. I wanted everything the same way that I had it before the pandemic. I was very protective of my normal life. And then when I got long covid, I became one of these disabled and immunocompromised people who is vulnerable. There’s a kind of tragic pathos to this but basically, the longer the majority of people keep ignoring this problem and reinfecting each other, the more people will be come disabled and clinically vulnerable as a result of their contact with the virus.

As you're referring to your community I guess you're talking about a queer community. How does being queer shape the way you experience long COVID?

This is a tricky one. There's a part of me that wants to say, because we're a queer community, we take care of each other. And that this has shaped my experience of long COVID because of people that I'm not blood related to, but who might be my chosen family, coming together to support me and each other. I really want to say that that's the case. But actually, at times, I felt very, very unsupported by the queer community. And I think a lot of other people with long COVID and/or other disabilities do unfortunately feel that way. Many folks in the queer community identify with intersectional feminism or this kind of politics. And if those are our values, we should engage more with Covid as an issue. Research shows that marginalised people are more at risk of long Covid than less marginalised people. That means trans people, queer people, women, racialized people, people with disabilities, the kinds of people our community says that we care about.

Yeah, you would assume that the queer community should be a safer space for you. But when safety means something different than for the community, then there might also be the experience of non-belonging.

Yeah, I mean, I think now my community changed because before I was much more into the queer party scene. I think, within the queer community, a lot of queerness is focused around activities that involve sharing fluids and contagion, and a lot of queer spaces are sex-positive and positive about like breathing all over each other and celebrating life together. And I also love to do those things, I've just had to find ways of doing those in a way that's safe. And I think there are ways that those things can be done safely. It is very meaningful when a queer event or party collective puts in some basic Covid safety expectations around their event, such as asking people not to come if they’re sick, or testing at the door, providing masks, etc.

So since getting long Covid I have connected a lot more with folks who, I would say were more likely to have been more marginalized within the queer community by default, who do want to come together and build stronger structures of care and support and family. And making that transition has been a big part of my recovery.

Does it play a role that long COVID is an invisible disability? 

Yeah, definitely. And not only is long COVID an invisible disability, but also, at least in my experience, my capacity fluctuates a lot. So there can be days where I can do different things, I can take care of myself, I can even socialize. At earlier times, it would be like, maybe I'd have a couple of days where I was doing okay. And then I would very suddenly struggle to get out of bed, or struggling to do any kind of normal activities. And that I think would make people around me question whether I was really sick – especially when it's an invisible disability. It's very hard for people to understand how much the experience fluctuates between being relatively ok, to suddenly being very unable to complete normal tasks.

Have you had some specific experience being a queer and a person with long COVID?

Yes. I'm really grateful that I am queer. And I'm really grateful that there are queer people around who are invested in the idea of community and ideas of mutual aid and care, and intersectionality. I think if I wasn't queer, if I wasn't in this community, life would probably be harder.

Yeah, totally. Is there anything that you would like to change in society that would help you also to live with long COVID?

Yeah, I mean, there's a lot, but maybe the simplest thing I would ask for is for people to take a harm reduction approach to COVID. So it's not like you have to stop socialising or stay in your house or wear a mask all the time. Maybe you can wear a mask in certain places, like on public transport, in the supermarket, at the pharmacy. Disabled people need to access these spaces and feel safe. And when you wear a mask, you make that space safer.

You can do a bit of research and find a mask that you actually feel comfortable wearing. A lot of them are super uncomfortable, but you can find one that works for you. There are nasal sprays that help to protect you from COVID. Doing a nasal rinse at the end of the day, like a salty rinse of your sinuses, that also protects you from COVID and also other viruses. There are lots of little things that you can do that keep yourself well. 

If you don’t get infected, then you don't infect your friends, and then your friends don’t infect someone who's really vulnerable. And if everyone just did like 20% more, we would all be 80% safer. That's kind of something I would really like to change.

Is there something else you want people to understand better about long COVID?

I think one of the biggest barriers to people engaging in a healthy or helpful way with the issue of COVID is their own trauma around COVID and the pandemic, and what it was like for them to go through lockdown. So I think also just like being gentle with yourself and being compassionate with yourself, and understanding that this is hard. It really is hard emotionally to engage with this stuff. But it's a worthwhile thing to do, both for your own healing and for the people around you.

From a queer feminist perspective, I would say that long COVID is like a wake up call for our society and that it's an opportunity. It's pointing out to us in a very visceral way, some things that we are ignoring but are very important. And as a phenomenon it's an opportunity for us to learn a lot about what it means to take care of each other. Currently we’re failing to learn that lesson, which is why more and more people are getting sick. But I believe we can learn it together and we’ll all be much better off if we do.

Freya, thank you so much.