 From the conversation, this is Don't Call Me Resilient. I'm Venita Srivastava. I speak about invisible illnesses, because we look normal, but you don't see, like right now my head is on fire, my throat is burning, the pins and needles sensation, the fatigue… you don't see that when you look at me. you see like she's smiling, so she must be healthy. If you don't pay close attention to news about COVID, you might think the pandemic is nearly over. But for the millions of people worldwide suffering from long COVID, that couldn't be further from the truth. And the number of long haulers keeps growing. At least one in five of us who have had the virus go on to develop long COVID. And the effects of long COVID are staggering. Medical researchers say it can lead to a frightening list of possible outcomes, including blood clots, nerve damage, chronic pain, extreme fatigue, and there is no treatment. So why don't we hear more about long COVID? Why haven't governments warned people about the risks we face? It could be that long COVID has been largely overlooked because of who gets it. Early research suggests that 80% of long haulers are women. And in the US where our guest today is from, black and Latinx people are most likely to develop long COVID. Margo Gage Whitfleet is a social epidemiologist who studies health disparities, including as they relate to long COVID. She's a professor at Lamar University in Beaumont, Texas, and she is presented to the United States COVID-19 Health Equity Task Force. Margo is also a black woman living with long COVID and has created a support group for long haulers who are women of color. Welcome, Margo. Thank you for having me. Margo, you're a researcher looking into long COVID, but you're also living with long COVID. I'm wondering how you're feeling. I am doing much better. I've been sick for two and a half years. I first got sick back in March of 2020, and COVID almost killed me. So I'm very happy to be here today talking with you. I'm happy that you're here too. It's so great to hear that you're feeling a little bit better. I'm wondering if you can explain a little bit about how long COVID affected your day-to-day life over the last couple of years. So when I first got sick with COVID, I believe I contracted COVID from a plane ride from Amsterdam to Houston. And quickly thereafter, I had started showing symptoms. It started out like a heavy flu, and then seven to 10 days later, that's when the real symptoms hit. The first one was feeling like an elephant had sat on my chest. I'd never been in that much pain in my life. Then shortly thereafter, I developed really uncontrollable shaking. And then after that, I started having respiratory distress, and so my oxygen levels would drop really super, super low. And we rushed me to the emergency room. My husband did. We lived rural, and because I'm a health expert, I knew that if I was to go to the nearest hospital, the chances were that I wouldn't be coming home. And so I said, you need to take me to the academic hospital. He never had seen me that sick before because I've never been that sick before. And he asked me, am I sure? Will I make it to the academic hospital? And I said, if you don't take me there, I guarantee you I won't make it back home. So for me, the respiratory distress would happen in cycles, and I would get into stress for about an hour to two hours, and then my body would rebound, and then it would feel as if I was walking in high altitude, kind of like a wounded animal, so I would just kind of lay there. And that was the beginning of my rabbit hole down this whole long COVID journey, which eventually turned into long COVID. I'm just listening to you talk, and I feel emotional just hearing the story I can't imagine what it's like to go through that kind of fear. How were you treated by doctors, especially at the beginning? Doctors were really skeptical to say that I had COVID. So in the beginning, I was making a video diary, and I didn't even know that I was chronicling my own sickness. When I went to the academic hospital the first night, they drug tested me. I was just getting drug tested and asked, did I take something? And then after that came back that this woman hasn't taken any drugs and we don't know why she's breathing like this, then they started treating me with compassion. And then later that night, we went on to another hospital. The nursing staff thought that I had a blood clot, but again, at this facility, the first thing they kept asking me is, tell us, honey, tell us what you took. Tell us, and I'm like, I didn't take anything. And so that was the pattern of how I was treated. When I spoke with the lung doctor, I was infantilized. He didn't even speak to me the entire time. There he spoke with my husband for most of the visit, even though I could speak. That's about race, but also gender. Yes, I think it was about gender. I think it is also about age. Research shows that this is not something that just happens to women of color. It happens to all women. It's just that it happens to women of color even more. So I check all the boxes. I had one PCP doctor. She would not let me talk the entire visit. And she would blame me for everything. They would check my blood. COVID elevated my glucose, elevated my cholesterol levels. And she's like, you need to start exercising and stop eating fried foods. First of all, you're assuming that my diet is bad. It's not. I have a very good diet. I'm very fit. That's not what's causing this issue. The lung doctor was like, I'm gonna give you the anti-inflammatory medicines, but he's also like, well, I'm also gonna give you something for your anxiety. And I'm like, I don't have anxiety. The reason that I am anxious is because I can't breathe at night. And so then because I can't breathe, that makes me anxious. At some points when I would get in there fast enough to the emergency room that they could see something's wrong with this woman, they visually see that I was having respiratory distress, but they were not able to connect the dots. When you said that they had to test you for drugs, what was that about? I think that they saw a young black woman coming in for respiratory distress. So they thought, well, when that happens most of the time, it's because the woman's on drugs, must be on drugs instead of seeing that it could be something else. And what I noticed in the online groups that I was in, that's one of the reasons why I started speaking out is that I would see story after story of women crying in tears about their doctors not believing them. And then you would see the black women saying, they call security on me. They've drug testing me. And we were the only ones where you were consistently seeing that pattern. And there was even a woman, I don't remember her name, but she filmed her horrific situation and she died in the hospital during her COVID visit because she was not being treated with compassion. There's other women in my group who have filmed about being ushered out with security. It's always black women who they're like, well, she's aggressive. She had an attitude when these women are coming to you because they're in distress because they have never been so ill in their life. And at this moment, what they need most is compassion and for you to see them as a human being. When did you, as a researcher, when did you start recognizing that women of color were disproportionately impacted by long COVID? Early on, and that's one of the reasons why I formed the BIPOC Women Long COVID Support Group was because I knew we were gonna need our own space. When people started messaging me asking me to look at their blood reports or this and this happened to me, they were telling me their stories. And so I knew that they needed a safe space and so that's what I created. So it's really like that they come into my living room and we're just sitting around with a cup of tea and I wanted to be able to use my education and my ability to bring them facts and keep them up to date. And so a lot of them, for example, they have gone on and they are being wonderful advocating for long COVID patient government on media and they say, without you having done that, we would have never known to speak up. You paved the way for us. And I appreciate that they're so appreciative about that but we're hidden figures in this long COVID fight because a lot of us were higher educated women and we just weren't gonna sit back and allow us to be railroaded. And because there were so many of us that this was happening to, it also helped give us collective strength and we are sharing our experiences, our strengths, our hope, what's working for us, what's not working for us. That brought in experts early on to speak to the women about recovery tips because long COVID is, you know, it's a post-viral illness. So there are a lot of people who have been dealing with post-viral illnesses and chronic illnesses long before COVID came on the scene. So I brought these people in to be able to speak to these women. So it wasn't just a place to rant about what was happening to us. It was a place to gain information and to share tips and we formed a type of sisterhood and we have all kinds of women in the group. It's predominantly African-American but I have Asian women in the group, Latinas in the group, Afro-Latinas in the group, Native Americans in the group. I have women for overseas in the group and for them, the overseas women, especially the ones in South America, it's particularly horrific because their doctors are even worse than what we were experiencing in America. I also have African women in the group, like from Africa, women from the UK who identify as immigrants. What happens in the group tends to stay in the group. Can we back up a tiny bit? Some of us may have some ideas as to why women of color are suffering at a higher rate than others. But can you explain some of those contributing factors? In America, women of color, especially African-American women tend to be heads of households. These women are really driving a lot of economics. They're the number one woman in the workforce. We are also heavily in the essential worker category. So you're gonna see us as healthcare workers making your Starbucks coffee. You're going to see us checking out your groceries and in heavy numbers. And then when the pandemic hit, it's hitting those essential workers first who happen to be mostly women and predominantly African-American followed by Latina. And then we're bringing this back to our community. The fact that I could work from home is a luxury. And I get that. And most people in these essential functions couldn't do that. So they had to go out or otherwise they couldn't eat and they couldn't feed their children. So they had to take that risk. And even before COVID hit, we all know that the health disparities in these communities with lack of access to healthcare, all of these things play a role. We have higher rates of diabetes, of these preconditions, which if you get COVID does not help you out at all. So then you're going to see higher rates of damage and carnage in these populations. We've been hearing a little bit more about long COVID, but still not enough. Why do you think there hasn't been as much attention from governments and from media paid to long COVID? I think governments are scared because long COVID, you can't fit it into a neat little box. You can't give someone a test and say you have long COVID. So then where does that put you when as we know long COVID can leave you disabled? For example, my allergist said, let me tell you, there are some people I've spoken to or I've seen in my clinic, they will never recover. COVID did such damage to their body. They will never be part of the workforce again. So governments get afraid of that and the economic ramifications from that and the fact that they might have to be taking care of this huge number of people. What are you going to do with that? Yeah, people have been calling it a mass disabling event. The US government decided that long COVID should be covered as a disability. Are people having trouble accessing the disability benefits or is this something that's actually helped? You bet. It sounds nice and it's great. And I'm so glad that all of our advocacy work paid off to get the government to actually listen. But it's not that we just magically get disability. People are having a fight, they get rejected. That's one of the things in our group. There's a person who helped them with their paperwork and all that good stuff. She's been a powerhouse in that because it's awful. And I realized I'm so lucky being a professor that I can have my job match my disability to a large extent. What do you mean have your job match your disability? I mean that I can start and stop when I need to. I can do more one day and less the next day. I do daily targeted meditation. If I was standing at the coffee shop, there's no way I would be able to do that. I have spoken with a journalist early on who also had lung COVID and this person told me they would have to pull out a mat next to their desk and take naps in order to get through their day and they're a pretty high profile news person. So I don't have to be locked to my desk and pull out a mat, could you imagine? But this person had to do this because they wanted to keep their job. So just imagine all of the women because it's mostly impacting women whose employers are not making any type of solutions to help them and probably don't even believe them and don't really care. And if they do care, there's not much they can do anyways because they're thinking about the economics of the situation. Walk us through your research a little bit. You're doing some research on the risks of lung COVID and how that's understood by certain communities in Texas. Well, Texas is a whole different ball game. I don't know how it is for you guys in Canada but COVID is a thing of the past in Texas and especially in Southeast Texas. I don't believe COVID exists really down here. Where I live, that's just how we run things in Texas. What I have identified thus far is that majority of the women have lost faith in their doctors or just in doctors in general. So that says a lot with how they're gonna navigate healthcare in the future. They're gonna be a little bit more apprehensive that patient-doctor relationship has really been damaged. I also identified that they're having multiple health complaints. So these women are having sometimes like 15 plus complaints and the doctors are still not believing them. And almost all the women I sampled were drug tested. So that's why I'm saying I see a pattern in that. And it's affecting women's mental health differently depending upon their age and the number of children that they have in the home. So just imagine a woman without children, she's able to turn off and a woman with children isn't even when there's a partner in the home. Sounds to me like when you're talking about a lot of trauma. So there's gonna be this unfolding of all this trauma as well for years. Yes, you're absolutely right. I actually in the group had a therapist come speak to the women about the trauma because we underwent a trauma. One of the things that the therapist said was that you need a therapist and then your partner, your spouse needs a therapist too because it completely changes the dynamic in your family system and any long COVID team needs to include a mental health professional. It's not just about physical health. You saw I'm sure in people with long COVID a lot of people have killed themselves because of the pain, just the huge depression that you go into, especially if you're young, it's like getting hit with a truck that you didn't see coming. It's like all of a sudden you're disabled overnight your life has changed 180 degrees from yesterday to today. Yes, but you can channel that into a positive doesn't have to be all bad. You really start to appreciate and enjoy life. And at least I did. I can't say that for everyone. Some people are still locked into that depression. And I mean, it's understandable if you're sick for so long that you're gonna get depressed. I've had my fair share of being depressed. But what I also learned from a healer that I work with someone who works in traditional medicine you have to do something every day that brings you joy because if you are feeling good mentally that also helps lower the volume of your pain levels. I'm so glad to be here like every single day because I used to go to sleep and we didn't know if I was gonna wake up the next morning. Like that's how bad it was. My husband would keep watch over me. So we didn't know if I was gonna wake up. So the fact that I'm not at that state anymore I'm really happy. A lot of people have been drawing this parallel between the experience of women of color with long COVID and those who are suffering from ME also known as chronic fatigue syndrome. So I'm wondering if you also see that parallel. Yes, I do see that. And I saw it early on. There's a research article in the UK that looked at ME and people of color get it at larger numbers. So women who suffer from chronic fatigue have been here for forever. The research shows that and the research also shows that we are underdiagnosed with it. And I believe the same thing is happening with long COVID, 100%. There's not even a doubt in my mind which says a lot because epidemiologists always like to say over 98.9% sure, nothing is ever 100%. But in this case, I've seen it over and over again firsthand. And I've read that it's actually one step worse, harder for black women as well that they expect a certain higher pain threshold. I speak about invisible illnesses because we look normal, but you don't see like right now my head is on fire, my throat's burning, the pins and needles sensation, the fatigue. You don't see that when you look at me, you see like she's smiling, so she must be healthy. For me, there has not been a day where I've woken up like without pain in two and a half years. So I have ringing in my ears daily and it gets worse as the day progresses and I get even more lethargic, the volume turns up and the headaches turn up. I have extreme fatigue. I can't exercise like what I used to be able to exercise. I have some type of like congestion. It's like I've had a cold for two and a half years. I have a sore throat, it's way better. I live my life in like a cocoon of just good feeling because any type of stress, it's just like a hundred times worse for me. But the positive part about it is that because it is happening to so many of us at the same time at one moment in history and we're not sitting down about it, we can use this time to push forward, carry the torch of what these women have been trying to do and say for forever, but no one was listening. So now we have that moment to put long COVID and then all these other women on center stage and say it's time to make change because this is the only way we're gonna bring about change. So groups like this Facebook group and other similar efforts, you're hoping that this is actually gonna impact the way healthcare is conducted. Yes, I don't think we're going to stop until it does because we're very tenacious. So I don't foresee us sitting down. They're forming alliances also. And then when you have things like the recover project that's gonna crunch out a ton of research on this topic. So they're just not going to be able to ignore it anymore. What still needs to be done? Do you think that needs to make treatment and research more equitable for long haulers? We need to stop using these outdated frames of medicine. Like medicine needs to move into like the current period that we're living in. And that looks differently, but that's just how it is. We can't help it. Like the fabric of our societies around the world is changing. And so it's just like with everything else, change is slow, change takes time, but change is inevitable and it has to happen. And COVID has forced us to open our eyes and like look in the mirror, like no matter how hard that is, like we're having to do that and have these difficult conversations. I think, and I believe that we will make a difference. Oh, I'm 99.8% sure on that one. I'm gonna say 100%. Margo, thank you so much for all your time today. Thank you again for having me. That's it for this episode of Don't Call Me Resilient. A big thank you to Margo Gage Whitfleet for her time and expertise. Do you have lingering questions after that conversation? You can go to theconversation.com. We have more information in our show notes with links to additional research and stories. To talk more about this, send me a note on Twitter. I'm at writevenita, that's W-R-I-T-E-V-I-N-I-T-A. And if you tag our producers at ConversationCA, they can get in on the conversation too. Use the hashtag, Don't Call Me Resilient. Finally, if you like what you heard today, please help spread the love, tell a friend about us or leave a review on whatever podcast app you're using. Don't Call Me Resilient is a production of The Conversation Canada. This podcast was produced with the grant for journalism innovation from the Social Sciences and Humanities Research Council of Canada. The series is produced and hosted by me, Venita Srivastava. The lead producer on this episode is Lija Navarro. Daniel Piper is also a producer. Remitula Shake is our audio editor. The consulting producer is Jennifer Morose. Our assistant producers are journalism students, Rukhsar Ali and Oli Nicholas. Atta Kakaki is our marketing and visual innovation consultant. And Scott White is the CEO of The Conversation Canada. And if you're wondering who wrote and performed the music we use on the pod, that's the amazing Zaki Ibrahim. The track is called Something in the Water. Baby, there's something in the water Baby, there's something in the water