Following her own COVID-19 infection and lingering symptoms, New York–based writer and producer Fiona Lowenstein founded The Body Politic COVID-19 Support Group, which is helping thousands of people who continue to suffer from lasting effects of COVID. Also in this episode is Nikki Brueggeman, a writer and historian who shares her experience as a Black woman navigating COVID-19 symptoms, and how she was unable to get a confirmed diagnosis, and how she looked to her close-knit community for the support she couldn’t find in the medical community. Join Brueggeman, Lowenstein, and Everyday Health’s editor in chief, Maureen Connolly, as they discuss the long haul of COVID-19 and the importance of advocacy work for survivors and marginalized communities. The following are some highlights from an edited transcript of the interview. RELATED: Tippi Coronavirus: Tips for Living With COVID-19 Maureen Connolly: Fiona, based on your experience having COVID-19 and starting the Body Politic support group, what are some of the most important things you’ve learned along the way? Fiona Lowenstein: Initially, the group’s purpose was to provide emotional support. I think of it now as a bit of a headquarters for the patient advocacy movement. We have a patient-led research team whose work has illuminated a lot of the issues facing long-haul COVID patients. I think the first issue is that there wasn’t visibility for these patients. There wasn’t widespread understanding and recognition that people could stay sick for a really long time. That is something that we need to be examining on a systemic level right now, because this isn’t our first pandemic. It likely won’t be our last. And when we talk about pandemic preparedness, we need to also be thinking about how we provide mental health structures for people who are experiencing mental health issues as a corollary of the pandemic, and also those patients who are sick for a very long time who need that support. Especially all of us long haulers, we’ve had to recognize at one point or another that no one is going to advocate for me in this situation. I have to kind of self-educate and be my own advocate. And I think it’s exhausting to take that on, but also, you know, to fully realize that and kind of internalize it, it can help you make these decisions moving forward and realize, Okay, this is my care. Connolly: Nikki, you experienced some pretty severe COVID-19 symptoms early on but were unable to get a confirmed diagnosis. Can you share what that experience was like? Nikki Brueggeman: For me, it created a sense of fear and rage. I’m sitting in one of the most powerful countries in the world, in a developed city, and I’m getting told we don’t have the resources to test you. And then I get on Twitter, and a celebrity tests positive for COVID-19. So, we have the tests, they’re just not available to certain people. It made me feel ignored, and like my health wasn’t being taken seriously. My decision within the health process was not being considered. How can I trust the medical establishment from this point forward to ever take me seriously or treat me in the right manner? I think it’s a very reflective experience of what it’s like to be a woman when you deal with healthcare providers, but also of being Black. It was kind of this ultimate slap in the face as an American during this time: We have the resources, but not for certain people. It created within me this deep rage. I felt as if I was part of a society that was being abandoned, and essentially, to have your government have an attitude of, “Well, I’m sorry, but you’ll have to figure it out,” when there’s a virus we don’t know how to treat that’s killing people, is absolutely terrifying. Lowenstein: There are also testing reliability issues. I mean, we’re even seeing in the White House that people are testing negative multiple times before they test positive. And unfortunately, these stories of patients not being believed are almost always coming from women, from BIPOC, from LGBTQ-plus folks, and from people who already experience medical bias and medical racism often. So, you know, it’s not necessarily new to these folks, but at the same time this is a moment where we really need to be supporting every patient out there and provide them with not just competent care, but the curious care they deserve. Connolly: Having been through this, Nikki, what advice would you give to people — especially people of color — who may be facing a situation similar to yours? Brueggeman: I would say that for every medical professional who does not listen to you, there will be many more who will. Even though you might hit a wall with a doctor who might not be taking you seriously, don’t stop. If you’re Black in this country, that’s something you learn from a very young age: that you have to push and push and push. Do not feel bad for pushing. So, I tell people if you feel that you need a second opinion, go see somebody. The Black community does have a very difficult relationship with the healthcare community, but at the same time, this is where you can get treated. Really know what your rights are at the beginning, make sure your voice is heard, and make sure you’re working with healthcare professionals who take you seriously. Make sure that it’s a collaborative process on finding answers for your health.
