Turning Away

The Hidden Suicide Epidemic of Long Haulers

What keeps me up at night is the despair Long Haulers share with me. A small handful of the people living with Long Covid who I’ve spoken with have not thought about suicide at some point throughout the course of illness. Some have off-handedly commented how upset they get when a friend stops showing up online. Bethany, someone I’ve spoken to extensively, knows several Long Haulers over the course of the pandemic who have died by suicide. This is an epidemic that is largely hidden from view. 

Those infected by the first or second wave of the pandemic are the worst off: these Long Haulers not only continue to live with extraordinary impacts to quality of life but for many, things are getting worse instead of “better with time, as recommended by some.” This includes around 20% of people who’ve developed Long Covid: there are no successful treatments, cures, or providers who can care for them, especially given the multidisciplinary care and coordination needed to manage Long COVID. Long COVID can present as symptoms such as anosmia or fatigue, as conditions or a collection of conditions such as postural orthostatic tachycardia syndrome or mast cell activation syndrome, or as conditions such as stroke, organ damage, and for some, even the development of cancer.  While some have a positive outlook, mostly because of the strong social bonds they’ve developed through online Long COVID support groups online by Vanderbilt University Medical Center or advocacy groups like the COVID-19 Long Hauler Advocacy Project, many still feel isolated. This isolation is compounded by complex and unrelenting living conditions—particularly when people have lost their homes because they can no longer work, and in the midst of the world attempting to “move on” from a threat still very much present and posing significant risk. 

Unsplashed: free to use Yoann Boyer

Karyn Bishof, a Long COVID patient who founded Covid-19 Long Hauler Advocacy Project, which hosts a total of 60 chapters across the U.S. and has a broad understanding of the challenges faced by the Long COVID community said, “We need to change our mindset of how we think about and empathize or put ourselves in other people's shoes, and recognize that this very well can happen to us. Tragic events happen all over, and one of the things you always hear is ‘I never thought this could happen here or happen to me.’ I mean, so many people have thought that about their kids becoming disabled from getting Long Covid because their kid was healthy and out doing athletics every day. They don't understand how this happened. Long COVID is a tragic event, it is a mass disabling event, and the comparison needs to be drawn because people don't understand it until it happens to them or happens to a loved one, and then it's too late. Their perception has changed, but now, so has everything else in their life.”

Karyn went on to explain how proximity to illness can sometimes be  the most powerful measure of empathy. She said, “Unfortunately, with invisible illnesses, which many times Long COVID can be, when it's outside the household, or someone not around you on a daily or frequent basis,  I've found that there's overall less empathy from them, from let's say, parent figures or siblings who live outside the household. Empathizing isn't happening with lets say a couple, or, a mom caring for her child because they see it on a daily basis versus hear about it on occasion, and are largely removed from the day to day barriers and experiences faced by the individual, if at all. With an invisible illness and dynamic disabilities, there will always be someone who asks what's wrong with you? You don’t look sick, because it's not visible to them.

Ruth’s Story

Ruth was laid off during the COVID shutdown. A few weeks later she got COVID-19. She became very ill, and then continued to get worse. She added new symptoms over the new few years: body pain throughout her body, extreme fatigue, muscle weakness, cognitive issues, and depression and anxiety. She got sicker, was unable to work, couldn’t afford her own place and lost her home. Eventually she was diagnosed with Long Covid as well as fibromyalgia and chronic fatigue syndrome as well as a reactivation of Epstein-Barr Virus. She stayed with friends and eventually moved in with her dad. He’s a pull-yourself-up-by-your-bootstraps type of guy, so he’s really struggled with Ruth’s illness. Her step mom is a harder shell to crack: she doesn’t want to hear about her illness and Ruth “can’t act sick around them.” She told me, “I have to pretend everything is okay—it just drains the life out of you. I’m very paranoid living with them. I have to do phone calls when they’re both not in the house. I’m living on eggshells. It’s a very abusive situation—emotionally and verbally.”

Ruth’s dad is careful about his money and beyond frustrated that she can’t work while he’s paying for her storage container in a town a state away. He’s pushing her to do a “phone job” where she can work from home. But he doesn’t understand her extraordinary cognitive disability. Ruth has a college degree and worked for years as an executive assistant, balancing multiple tasks, numbers, and people constantly. Now she can’t figure out how to manage her medical bills or disability forms. In fact, she is close to have a hearing for her disability. She’s hoping those small amount of funds will enable her to get a place of her own again, so she can leave her current situation where she feels unsafe. She said, “I’m feeling desperate about the disability coming through. I’m living under so much pressure and it’s just worse. They don’t help me do anything—I have to hold onto counters to get from my room to the fridge.”

She continued, “I feel very lonely—very alone. Like I can’t be myself with anyone. I feel like I have to accommodate them, so they don’t feel uncomfortable. You don’t want to be a Debbie downer—where people don’t want to be around you either.  As far as the future, I don’t know if I’m going to get better to get a job, get disability, and live on my own. There are so many unanswered questions. Before covid I did everything on my own and now I have to do so many things just to make it to an appointment like setting alarms and putting post it notes around the house.”

Ruth only just applied for disability in March of this year. She’d already been sick for nearly three years but kept telling herself to trust in God and God would heal her. She worried that applying for disability would be hypocritical because she was going to get well. She didn’t want to let herself think otherwise. When she met with the lawyer who was specifically helping Long Haulers, the lawyer was able to push her claims through quicker because she was homeless. She was denied twice, however. She was told that this was mostly likely because they never read her application to begin with. “it’s all very—what’s the word?” she asked me. “Subjective?” I asked. “Yes, subjective—when someone may accept it or another might reject it.”

She went on, “I just don’t have the time to wait for it. The lawyer told me, ‘we don’t take cases we don’t think we can win. You have a solid case—there are tons of doctor visits and records.’  I just don’t have the time to wait for it.” Both denials involved generic form letters that told her nothing specific about why she didn’t meet the qualifications. She was advised that people are typically rejected once or twice, so she tried again. The next step in the disability process is to have hearing about her case where the judge reviews her whole file, including notations from her doctors.  

Ruth said, “For the hearing, I’ve gotten a few more doctors filling out forms and writing letters. I have several hundred pages of records at Vanderbilt. I have 28 different specialists. The last visit I had with them was right before I moved to Texas last year. The last doctor said she’d looked at every test, office note, and there is nothing else we can do for you. I’ve tried different medications and protocols—everything. And here I was losing my home and it was devastating—it was probably the worst part of this whole thing.  Losing your home is losing your security and comfort. I’m used to living on my own, I’ve been single for many years. Losing my independence and freedom has been the most traumatic part. And not living with healthy people makes it that much harder.”

With her hearing coming up, Ruth had to explain to the courts why they needed to move quickly. She had to send her lawyer an email explaining the situation about the people she was living with, explaining how it was affecting her health.  She put the letter in with the appeal as a “dire need situation” to get the hearing sooner. It’s not only about living with people who she finds challenging: she has lost her savings, home, and friends to Long Covid.

Most of the food she purchases is with food stamps. Last year she gained 70 pounds. But this year she’s lost 45 pounds—she explained how strange the arc of the illness is with her body—although this year she’s made a concerted effort to lose weight. Having limited funds plays a part in this; she usually eats a can of chicken with mayonnaise, accompanied with an apple; this is a common lunch. She eats one meal a day with her housemates, and snacks on boiled eggs at night.

Over the course of her illness, Ruth has fallen into a deep depression and suicidal thoughts have not been uncommon. The most severe aspect of Ruth’s symptoms is chronic unrelenting muscular pain. She said, pain meds didn’t help, “they rarely take the edge off.” She’s taken hydrocodone, and often takes Tylenol and Aleve. She said that many times she’s had the thought, “I can’t endure one more day of this. There is no quality of life and it’s difficult to do the things that bring me joy.” Some of this pain is linked to her loss of identity; for years she’s sung in clubs on the weekend; she sings on local tv and the radio, and had even made a couple CDs. She loves old country music and hymns.  She said, “I had plans to make other CDs with a friend of mine and then I got COVID and it all kind of ended.”

Ruth explained that most likely her dad can’t understand her illness because she was so independent, responsible, and full of life before. Before COVID she was incredibly organized and never lost anything—now she cannot keep anything straight. She said, “Last week I lost my phone four times within a few hours while I was working on papers. And my dad cannot comprehend this—he doesn’t understand this whole cognitive thing going on. I asked my dad to read Jim Jackson’s book Clearing the Fog and I asked him to read this book to understand me and the symptoms I’m going through. But my dad wants to ignore it and for me to get back to the old Ruth so they can feel more comfortable. They want me well because it’s too hard on them to see me sick.”

Even though understanding her illness was hard for her dad, Ruth has such cognitive disruption that she has strategies that she brings with her into the clinic. She has a one-page single spaced document describing her major symptoms and physical and cognitive limitations in case her clinicians are new and don’t understand the depth of her suffering. She says, despite having suffered for more than three years, she has “had trouble getting care.” Ruth’s tests came back normal—unlike others in her Long Hauler group who have secondary conditions that have clear treatments.

She explained, “I used to get frustrated at Vanderbilt when tests came back normal. I’d think—why can’t they find something so they can give me something for it? I finally discovered that these tests are not made to figure out Long Hauler Covid. These typical standard things are not available yet. So I do it to see if I have anything else going on like Lupus or other conditions other people do. For disability I have to keep pursuing care for that as well. I am very grateful in the midst of all this that I don’t have other illnesses or serious things going on.

Even still, Ruth’s relieved she’s not on the street. She has a close friend who owned a company but couldn’t run it anymore when he got sick. He lost his company. Then he fell into financial ruin and lost his house. He still had his truck so he lived in it until it broke down. Now he’s on the street. So Ruth is grateful to have a roof over her head, even if it’s not an ideal situation.

She explained to me how so many people in her long hauler group struggle financially. “The majority of us are professional, responsible people who this happened to, and we’ve gone from being so high functioning to highly debilitated. It’s tragic what this has done to our lives. Dr Jackson talks about acceptance—this is where I am today and I think I might do one little thing that can bring some joy. I might turn on Youtube and sing songs that I used to sing with the band.” Due to Dr. Jackson’s encouragement, she got the courage to sing with a couple bands recently on stage, bringing her so much joy. 

Jim Jackson has been working to support the Long Covid community from the beginning. He was working with people suffering from Post-Intensive-Care Syndrome (PICS), a condition where health problems that remain after critical illness that may involve physical pain, thoughts, feelings, or cognition. These lingering effects of critical illness not only affect the patient but also the family. “So when the pandemic emerged,” Jackson told me, “we already had an infrastructure that was built, we didn't need to build one. We started seeing patients who had been in the ICU with Long Covid so they were very much in our wheelhouse. We started seeing those folks [who had not been in the hospital], noting that there were a lot of similarities between them and critically ill patients before COVID. I mean, they're largely the same people, more or less same outcomes. So we started seeing them.”

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He went on to explain that they discovered that some people who were never hospitalized with COVID-19 were developing similarly debilitating symptoms. “It was sort of like that homage, if you build it, they will come,” he said. “We hung a shingle up, so to speak, and people just started coming. We had a support group for IC survivors since 2015 or so.  I thought, why don't we add a Long Covid support group? People would probably benefit from that. And so we added one, and then we added another one another, and another one. And so now we have five. We have five total support groups. We see close to 100 patients a week.” Although most patients are from the U.S., they have people joining these groups from around the world. And they have waiting lists.

“I thought a lot of other places would embrace this kind of psychology led support group model. I felt sure that that it would really proliferate. That really hasn't happened. So that's been a little bit of a disappointment, I think, because our program has worked so well. We have an interdisciplinary team.”

Ruth told me, “Dr Jackson is amazing—he’s very compassionate and knows what we are going through. Most people don’t believe us and don’t understand what we’re going through. But Dr Jackson has something special about him and he gets it. And getting on the calls with other people who are experiencing the same thing can be helpful. It can also be depressing—when I see others in the groups struggling even more than I am.  This year I’m trying to be hopeful and trying to trust God more and opening myself up for good things happening to me. I’ve been doing counseling throughout this illness. When I had to move, I was devastated that I had to leave my counselor and she was the perfect fit for me. But I’ve struggled to find a new counselor—one just sat there and didn’t give any feedback or show compassion and didn’t understand the Long Hauler thing.”

Ruth’s faith in God has been the glue holding her together. Dr. Jackson’s input and encouragement as well as the people in her online support group plays a central role, too. Unlike many people I’ve spoken to who are in multiple online communities and chat groups, Ruth only has the stamina to participate in Dr. Jackson’s group. His team helped her with different resources associated with disability, housing, and counseling in ways that are crucial for her survival. This type of holistic care—recognizing that she can only live well with Long Covid if she can improve her social, emotional, and financial situation—even if her physical health doesn’t improve.

Listen to Dr. Jim Jackson talking about Clearing the Fog on NPR.