For These ‘Long Haulers,’ Covid Is Still Taking a Toll

LINDSEY WELLS, HOST: From KVMR and in partnership with FREED, this is Disability Rap. 

MARY LADD: We still feel like ghosts to ourselves because we can remember it wasn't that long ago where I could do X, Y, and Z, when I was so active, when my community counted on me and I could show up for them. 

WELLS: Today, voices from The Long COVID Reader, an anthology by and for people with Long COVID. 

LADD: I think the biggest gift we can give each other is just ask, how are things, and don't provide any advice. Just listen. That's all. That's the biggest gift you can do. If you don't know what to do, sit on your hands, bite your lip, bite your tongue, don't say anything. Just listen. 

WELLS: That's all coming up on Disability Rap. Stay tuned.  

CARL SIGMOND, HOST: Welcome to Disability Rap. I’m Carl Sigmond with Lindsey Wells.  

WELLS: Today, we continue our coverage of the COVID-19 pandemic and the long-term impacts of SARS-CoV-2 on people's health and everyday lives. We in the disability community know that the pandemic is far from behind us in the United States. Although the numbers have significantly decreased from 2020 and 2021, people are still getting sick from the virus and some still need to be hospitalized. 

Although most people who contract SARS-CoV-2 fully recover, some people continue experiencing symptoms long after their initial COVID illness. A new anthology out last month explores the wide-ranging and often debilitating impacts long COVID can have on people's lives. The Long COVID Reader is a collection of stories, essays, and poems from 45 long-haulers, as they call themselves. 

The collection draws works from established writers and poets such as Pato Hebert, Emily Pinkerton, Morgan Stevens, and Nina Storey, as well as from people in other professions. The book reflects broad demographics, diverse skill sets, underrepresented voices, and those with little writing experience. We're joined by two guests. Mary Ladd is the long-hauler publisher, founding editor, which published The Long COVID Reader. She has written for the San Francisco Chronicle, Playboy Health, and Wildfire Magazine. She's based in the Bay Area. 

Jessica B. Sokol is also with us. Jessica believes COVID-19 hit her in February 2020. She survived intubation on a ventilator. Her first book, For Better and Worse, was published in 2016. Her stories are featured in Dorothy Parker's Ashes, Music Museum of New England, Forbes Library, and Valley Love Letters project in Northampton, Massachusetts. Her essay, Three Years and Counting, is included in The Long COVID Reader. 

SIGMOND: Well, Mary and Jessica, welcome to Disability Rap. It’s great to have you with us. Congratulations on the anthology. Mary, I want to begin with you. What inspired you to embark on this project? You have said that you were meeting a need in the community. What was that need? 

LADD: Thanks, Carl. I decided to do this book-- I was first infected last February in 2022 and I was quite sick for weeks and months. Then I started to think about there's a publication-- I had breast cancer 10 years ago. There's a publication called Wildfire. Wildfire allows people who have breast cancer or breast cancer survivors to contribute poetry, stories, and other writing. I always get so much when I read Wildfire. I usually read it cover to cover or I read the emails immediately. 

The reason I do that is because I feel seen, I feel heard, I feel less alone, less afraid, especially middle of the night or those times when I'm having really horrible symptoms. I started to wonder, when I had a little more energy, where's the Wildfire for long-haulers, and I wasn't getting better. I know that when I write, I feel better. I've also taught and helped others do the same. I decided to open up the project and launch it because no one else is doing it. 

We don't have time to wait. Most of us need support. Getting our stories out there is a great way to bring about awareness, but also bring about change so we can get better support treatment, possibly a cure. 

SIGMOND: Great, and we were really impressed that you got 45 people to participate, and such a diverse group. Can you talk a bit about the recruitment process and how you gathered this group?   

LADD: Absolutely, I have a lot of help. There were people who helped me. Lydia Sviatoslavsky, she helped me with another book project. We put out what's called a call for submissions. We let folks know in writing publications, websites, newsletters, things like that. Then we also worked with groups like The Long COVID Alliance. There are so many patient advocacy groups for long-haulers. We message as many people as possible. We revved up social media. We started this full process one year ago. It's very specific this is not a book by and for writers, because that would be an elite book, to be honest. 

This is a book by and for long-haulers. We want people who may not have ever written before to participate, because their writing is important, their story is important. People were so excited. A lot of folks contributed from around the world and said, "I want to be a part of it." I thought, well, let's just do one book to start. Let's see how it goes. We just had support from COVID researchers and people getting the word out. They had almost four and a half months to write and submit something to us. That's how we recruited. 

WELLS: Thank you, Mary. Jessica, I want to bring you in here. Can you briefly share your experience with long COVID? How did you get involved in the project? 

JESSICA B SOKOL: I'm a creative non-fiction writer. I focus on contemporary travel, music, food, sex, and loss. I lost my job as a senior study abroad advisor in 2020, very early on, due to the pandemic. I also believe I caught COVID in February of 2020 coming home from a trip from Europe. My illness struck me right away then. I woke up with labored breathing, a very high fever. I didn't get better for two weeks, nothing was diagnosed. 

Ever since February 2020, I've had chills, sore throat, heart palpitations, fevers, unshakable migraines. I just never really got better. As COVID kept ramping up, my husband and I stayed very vehement in our apartment. We never left. I still haven't personally been to the grocery store, or been around kids with sniffles, but I kept getting sick. In August of 2020, I came down with another 104 degree fever. I was rushed to the respiratory center, where they did tons of tests. They kept putting me on antibiotics for pneumonia, lung pleurisy, all these things. None of the antibiotics worked. I ended up being on them for about a month, and I still never got better. That was in August of 2020. 

When the vaccine came out, my husband and I got them right away in April of 2021. Then in June of 2021, I started coughing up blood. I was rushed to the ER. I was not properly treated on time in the ER, because there were so many unvaccinated patients flooding the floors of the hospital. My coughing up blood ended up being hematosis, which is throwing up blood all over from like the CAT scan room floor to the operating table. Eventually, I could not lie down. I was choking on myself. I was put in a medically induced coma, intubated on a ventilator. 

I ended up with a large cavity in my right lung that got severely infected and was not ever properly treated on time. The pulmonologist told me that I was the interesting case in the hospital, not knowing if it led back to the August sickness or the February 2020 sickness, because COVID was not recognized, COVID was not properly treated. People were not properly treating it as seriously as it was. Even as a vaccinated patient, I still got this sick at the height of COVID-19. 

I still suffer because I have a large cavity in my lung, which has not healed to this day. I have an upcoming CAT scan, actually. I still have to have lots of blood tests. I have severe anxiety, insomnia, and post-traumatic stress on top of labored breathing and everything that comes with long COVID. On top of my story, I just want to thank you all for listening to us, because it is something that a lot of unheard voices are trying to speak out against. Especially as a woman, I feel very unheard. I feel like my doctors have not really paid that much attention to me and my symptoms. They're not getting any better. I'm certainly suffering along with a lot of other people. 

I'm grateful for my ability to write, to share my stories, and to be able to really face a community that's dealing with this disability and us feeling left behind. Also, I want to add in that I always look at things with a little bit of glimmer of hope. I want to remain positive, which you all do as well, and I can seriously sense that vibe, which I so appreciate. Because we might have lost our good health and our livelihood, but I still feel optimistic about the future, and I just want to shed light on that as well. 

WELLS: Jessica, you mentioned in your essay that your husband is still quite attracted with you, and what does that mean for you? How did that feeling come about to know that he was there for you in one of your darkest times? 

SOKOL: Thank you for asking that question. It's such an interesting thing to think about. Joel has become my full-time caretaker, the sole bill payer, my therapist, in all addition to being my husband. He's retired from the airlines. He used to work as a flight attendant. He obviously retired during the pandemic after 15 years, now works full-time from home. I find it a miracle that my husband is still deeply sexually attracted to me. We used to have a very vibrant sex life, and my sex drive has definitely gone down. 

I find it so amazing that he's outwardly still in love with me and craves me in a physical way and wants to make love after all we've been through because, for me, my body's so transformed, but he proves it time and time again, and I do my best. My body just doesn't feel like mine sometimes because it's so vulnerable, and it's been through so much, but I really want him still, and our love has definitely gone through its ups and downs, but not in a way where the sexual desire has even dwindled, and I'm so appreciative of that as someone that really did used to have a really big sexual appetite. 

He just embraces me, and when we just need to snuggle, we just snuggle. Our nicknames for each other are actually The Snugs, and they have been for 10 years, and now it just actually speaks more to the truth of that than ever before, that the embraces and the warmth and the leg scratches and the neck massages. Just even the kiss on the lips, it does my body good. It doesn't mean that we have to go hog wild all the time, and I'm just so grateful for that. 

WELLS: Thank you. My next question is for Mary. In your essay, you were pretty graphic in explaining how long COVID impacted your body. What do you hope that readers take away from your story? 

LADD: With invisible illness, a lot of times, folks, we look okay. I think it's easy to forget that we're still sick. We look "normal" or people think, well, you were infected, that was a year and a half ago, you're fine now, right? There's so many people like me who have invisible illness, and they're still grappling with issues and symptoms. What I'd hope for people to take away is if they don't have long COVID, or they haven't thought about long COVID, they might say, oh, I had no idea, so that they can understand what it's like to walk in my shoes just for a minute or for an afternoon or an evening. 

Yes, it's graphic. I think that you can draw people in when you're talking about bodily fluids, about being stuck in the bathroom, maybe you want to look away. There's just a little bit of humor, I think, with the bathroom piece specifically, so that it might resonate, it might stick with you. It might be something that you can think about, talk about, or just it sticks with you so you won't forget it. I don't want you to forget me. I did this book, not for me. It's for us, millions missing. Millions of folks who have disabilities and health issues. Keep us in mind, don't look away. 

WELLS: That is great, what you said about that, and that leads to the next question for both of you. I want to ask a question about identity. For many people with long COVID, I imagine that they didn't used to think of themselves as disabled. Now people find themselves with disabling and life altering conditions. In your conversations with other long-haulers, how have they grappled with the new reality and issues of identity and body image? 

SOKOL: I have a very interesting take on this because I did apply for disability. I was denied. Even after my husband and I had to move out of our apartment because we were downtown and it wasn't safe for me to live there. We moved to the country, but I don't drive and so there's no way I can walk anywhere. I'm also disabled, not from that reason, because I haven't driven since 2007 due to a drunk driver that hit me. I've always lived in places where I can walk to the store, to my work or something. 

Now that I'm in the country, because I can't live downtown due to the respiratory condition, I can't even walk places, so I'm very isolated to just stay healthy. When I talk to other people that were denied disability, a lot of people I know that were, they give us these list of reasons that, oh, but you can still find a part-time job from home for minimal income. I don't think that means anything because A, I can't, and B, the fatigue from day to day, the migraine from day to day, the lack of ability to even go into the office if it's called on for a week. 

The fact that we're still being denied this claim is pretty ridiculous. I hope that, for lack of a better word, sorry, but it is ridiculous and incredibly frustrating. I love, Mary, what you said about it being an invisible disability, but it is. I can't leave my house and I can't travel. One day does not mean that I'll be healthier than the next. It's very frustrating to think that the government is denying us that because we don't show it on a day-to-day basis, on a minute-to-minute basis. I'm incredibly frustrated with that part of the disability, and I know a lot of my friends are as well. 

LADD: Yes, I'll chime in. I also applied for disability. I was denied. I already had a sense of what it's like to live in a disabled body from having breast cancer. It is different. It left a lot of damage, but it was a part-time thing and it was unknown how and when that would affect things. I already had brain fog back and fatigue, but this is so much more damaging and difficult to plan for. 

I think that people that I've interacted with and listened to in various online forums and for the book itself is, for me, my life and my brain, it feels easier when I just accept it. This is how it is. Someone asked me, were you mad when it happened? What emotions came up? Well, yes and no. The closer I get to acceptance, the easier it is for me to just say, okay, it is like that instead of denying myself what the reality is. 

I know that that's an incredibly difficult process and not everyone wants to accept their disabled body, brain, and identity. We still feel like ghosts to ourselves because we can remember it wasn't that long ago where I could do X, Y, and Z when I was so active, when my community counted on me and I could show up for them. I could make plans. I could go places. All of that changes with long COVID. 

It feels unmanageable if you think of it that way. Also, again, just the acceptance piece helps me personally. I know I also accept others just wherever they are in their journey and if they want to embrace the identity or be a part of that sort of thing. It's welcoming community. That's the one very exciting thing. You can find support. You can find others any minute of the day and just get online because there's so many groups and podcasts and things, information, help. Not necessarily funding though, right, that helps us with our housing and everything that we need, but let's keep working together. 

SIGMOND: Thank you both. I actually want to follow up on something you said, Jessica, and then maybe Mary can weigh in as well. The issue of believability around long Covid being this new phenomenon where the symptoms are not cut and dry, not consistent. So believability, and then if you want, you can weave in the gender piece or other identities in there. Jessica and then Mary.  

SOKOL: I remember back when I was sick in February 2020 before COVID was even recognized. I don't blame really anyone at that point for not knowing what it was. As symptoms became clearer over time, especially when I got sick in August of 2020 and I woke up with 104 degree fever, my entire chest was in unbearable pain. I couldn't move. I remember not being able to move my arms to get water. I couldn't breathe. My doctor was like, "You've got to get to the respiratory center." I couldn't walk down the stairs. My husband carried me, drove me to the respiratory center. We did all these tests. Still there, people were not wearing masks. They were not social distanced. It's August 2020. We know to wear masks. We know what's happening. My doctor over the phone is hearing everything going on from the respiratory center and he's like I tested negative for COVID over and over and over again. He said, "I'm still not seeing you. You're not allowed in our office because there's so many false negatives going around. There's too many false negatives." I know I was one of those false negatives. That's why he refused to see me. 

Put me on Mondo doses of antibiotics. That didn't work for 30 days. Put me on 30 more days of antibiotics. My gut was torn to shreds. Joel held my hair over our toilet every night. I wasn't being listened to that this was not pneumonia. These were not the right antibiotics for me. Then less than a year later, I'm back in the ER but I'm coughing up blood. I'm not getting treated on time. No one's listening to me. My white blood cell counts, ANA numbers, off the charts. I'm literally physically in front of these doctors and nurses coughing up blood in the ER and they're doing nothing. They're telling me to wait and wait and wait. 

They're testing me for all sorts of other things, including something like tuberculosis. I didn't have tuberculosis. I had something wrong with my lung, obviously, and they just kept putting off treating me. Then after the fact, after I was intubated in a medically induced coma. I was in the ICU for 12 days. After five days, I was in the coma, relearning how to walk with a walker, relearning how to lift a fork, relearning the English language. After that, remembering how to live. Doctors were still not listening to my symptoms and just saying, "You're the interesting case in the hospital." 

I'm still to this day having a cavity in my lung and all these symptoms that every lung-hauler has experienced, from heart palpitations to the trouble breathing. I have had an inhaler from the first time I got sick. I'm on anti-anxiety medication because of all the stress. I wake up with constant nightmares. Even when the disability people said you should really speak to a psychiatrist, so we can see that like your mental and emotional state isn't great either after all you've been through. The psychiatrist was wonderful. He was just like, I really hope that other people see this from your point of view about the stress, about the PTSD, about the nightmares, about the insomnia, about the anxiety, about the heart palpitations and the panic attacks constantly. 

I still feel, when I tell that, it's not really being listened to. I feel that, as a woman, when I get fevers in the middle of the night or hot flashes, even though I'm 39, they might call that pre-menopause and not long COVID. I was perfectly healthy before February 2020. I want to also note that I hadn't been sick since I think it was January 2016 from food poisoning on a Barcelona business trip. That was like a one-off. 2016, food poisoning, Barcelona. Before that, do not remember the last time I got sick. 

All of a sudden, starting in February 2020, after that first illness, I am consistently ill and getting sicker. I do not believe that I was listened to. I still do not believe that I'm listened to some of the time. Mary has certainly helped that. Carl, Lindsay, this community certainly are. I really, from the bottom of my heart, appreciate this. 

LADD: Thank you, Jess. It's really important for us to be able to speak our truth. When we're together on events like this and reading each other's truth, it's so powerful because we can be believed. I, as a woman, appreciate it the most when-- I'm in two long COVID studies at UC San Francisco. I don't have to explain to them these symptoms are real, even if the scans and the tests don't quite show evidence of how sick I am at times. They believe COVID is real. You have me thinking about the female piece. We're expected to do more. We're the caregivers in society. What are we doing when our caregivers are sick? Some of us don't have the support. Society is going to see the consequences of that. 

Our youngest contributor is named Haley Nelson. She is 19 years old. She Haley was athletic, academic, and very animated, super involved with school activities before long COVID and other conditions, including small fiber neuropathy completely uprooted her life. She's told us that she wants to share her story, so no other woman is made to believe that the symptoms are all in her head. 

The medical gaslighting is real. We do experience it. I know that all long-haulers are susceptible to that. It's more important than ever to provide support to each other. Even just reading about all the various symptoms can help because it just is a verification. You exist. Your experience is happening. Your experience is real. Another issue that we do face is that sometimes our friends and family don't quite believe us. "Oh, long COVID. It's just a cold. Oh, take this supplement, drink this tea, try this product, exercise more," which is harmful a lot of the time. "Rest more," even if the quality of your sleep is horrible, and you have insomnia like Jess and I do. People have solutions for us, but they're not quite listening. 

I think the biggest gift we can give each other is just ask, how are things? Don't provide any advice. Just listen. That's all. That's the biggest gift you can do. If you don't know what to do, sit on your hands, bite your lip, bite your tongue, don't say anything. Just listen and take it in. 

WELLS: Okay. You answered my next question. I was going to ask you what advice do you have, but what self-care would you suggest for people who have long COVID? 

SOKOL: I just want to piggyback off of what Mary just said. I think it's so interesting that so many people say to me, "Oh, you just have to exercise more, you have to eat more, you have to sleep more." That is something I try to do and it's nearly impossible. When family is like, "I don't understand why you're still so scared," or friends are like, "I don't understand why you're still not going out." All of these things are more harmful than they are helpful, because they're not helping us at all. We know what we can do, and we're trying our very best. 

To answer the question, Lindsay, I guess, is that to just be supportive. That's the vital part. If we are out even a little bit, just be happy that we're out, and don't try to focus on the fact that we may be a little sleepy or not eating as much, or we admit that we don't exercise, or haven't gone out the last time, or haven't seen your children. That's not on us, right? We are not choosing this lifestyle. I certainly haven't. Mary has not. None of us have. It's hard enough mentally and emotionally as it is to give up everything, as far as work and life and family and livelihood and your health. To hear advice from people that have no idea what you're going through is just more negative and not positive. 

LADD: I think there's so many ways for people to do self-care, and it's personal, and it's what works for you. Nikki Stewart is one of our contributors, and at our Green Apple Books on the Park launch last week, she said, "I am enough." That's her piece. It ends with that. That's an important statement to hear. That's also an important statement to try and emulate for me. Because that means maybe I'm enough, even if I'm not able to get to everything I need to get to work-wise, and I feel like I'm just not doing it enough to get better. Maybe it's taking those quiet, calming moments. What is it that helps me feel better? Is it laying on the couch and watching something on TV that's fun, funny? Is it cuddling with my adorable dog? Is it having something that just tastes good, that's a hot tea? 

I think I also get a lot from it helps me feel better to stay connected to others. When they check in, like, "Are you resting?" No, I'm not, but thanks for reminding me that it's important. I think stay with people and situations that nourish your brain and body. If there's drama, if there's disbelief, if there's sarcasm or hurtful words, I don't need it. The power of no thank you has helped me so much. Just I don't need that. I can't, energy-wise, do that anymore and so I don't. I just sit some things out and back out of some friendships, or stay away from people that they don't feel like they're going to help me feel like I'm enough or feel healthy and accept myself as I am, if that makes sense. Thank you. 

WELLS: I am enough. That is perfect. We know that the pandemic is not over and people are still getting sick with COVID. As more and more people have long COVID symptoms, how can us as the disability community best support these new members? 

LADD: It's always a good idea to point them to websites that are tied to medical organizations. Harvard, Mayo Clinic. Mayo Clinic has a really powerful listserv where you can type in whatever symptom you're having and get in a chat with folks. I like to steer folks in that direction when they're feeling panicked and unsure, and try and get into a research study if you live close enough to a facility. If you have someone who could get you there, that can be helpful. 

Finding a provider that takes long COVID seriously, has a curiosity about it. Just, yes, there's so many online-- The Long COVID Alliance is really helpful. I think just finding people who are going through it or went through it can help just understand, well, what's the schedule going to look like? How does that person grapple with it and deal with it? Yes, finding community is probably the number one thing you can do. There's so many wonderful people out there that will welcome you. That's the one thing that I think-- we welcome folks. We know you didn't want to join the club, but we're glad you're here and we'll help you, we'll be with you, we'll listen to you whatever you're going through, that kind of thing. 

SOKOL: Yes, I think the community support is really important. I am still an extroverted person, extremely extroverted. This has been incredibly hard on my psyche to become an introvert. I do think that doing Zoom still with wonderful folks like you and also with your friends and family is just really emotionally uplifting. Just knowing that if you're physically down, you don't have to always be mentally down. I know, for me, socialization in any form always perks me up. Also to know if there's a community behind you, that's a big amount of help for sure. 

WELLS: That was Jessica Sokol, a creative nonfiction writer and editor based in western Massachusetts. Her essay, “Three Years and Counting,” is included in the new anthology, "The Long COVID Reader: Writing and Poetry from 45 Long Haulers,” which was published last month. We were also joined by Mary Ladd, founding editor of Long Hauler Publishing. We’ll include a link to their recent virtual book release party in the notes for this show on our website, disabilityrap.org.  

And that does it for the show. Disability Rap is produced and edited by Carl Sigmond and Courtney Williams. You can go to our website, disabilityrap.org, to listen to past shows, read transcripts, and subscribe to the Disability Rap podcast. You can also subscribe to our podcast by searching Disability Rap on any of the major podcast platforms. We are brought to you by KVMR in partnership with FREED, and we’re distributed by PRX, the Public Radio Exchange. I’m Lindsey Wells with Carl Sigmond for another edition of Disability Rap.