When Sam Norpel became ill with COVID in December 2021, she worked through the infection to meet a deadline. The former chief digital officer had a product to launch and no time to waste.
Norpel met the deadline by working from bed, but her life became unrecognizable.
A few months later, now debilitated and bedridden by long COVID, the 48-year-old mother of three and family breadwinner confronted an unfamiliar foe: suicidal thoughts. First, a malicious idea crossed her mind. Why hadn't COVID just killed her, she wondered, as financial concerns mounted and chronic pain persisted. That thought faded as her health improved.
But months later, following worsened neurological symptoms that preceded a diagnosis of mild cognitive impairment, she experienced specific suicidal thoughts that felt far more insidious.
"It was that my whole identity was fractured," says Norpel.
A loving text from her teenage son, sent unwittingly at precisely the right time, helped alleviate the intensity of Norpel's thoughts. So did an exchange with another long COVID survivor who reached out to her online, and who also felt suicidal. For the first time in a while, Norpel felt useful as she offered empathy. She had missed feeling like her life had meaning.
Norpel's experience isn't anomalous. On Facebook, Twitter, and in other online groups and communities built by long COVID survivors, the topic often comes up, either in public conversations or direct messages. As pandemic emergency declarations expire, long COVID patients say it feels like they're being left behind, without the financial, medical, and mental health resources to navigate their chronic illness — and the despair that can accompany it. But survivors interviewed by Mashable say that the empathetic connections found in their online communities offer a refuge from suicidal feelings, give them elusive hope, and help restore their sense of purpose.
Long COVID, suicide, and online communities
Though suicide is complex and caused by multiple factors, the possibility that long COVID increases risk is concerning given that an estimated 11 percent of the U.S. adult population(opens in a new tab) currently has long COVID, broadly defined(opens in a new tab) as signs, symptoms, and conditions that continue or develop after the initial phase of COVID infection.
Serious illness, including chronic disease, is a risk factor for suicide(opens in a new tab). But so are other experiences that commonly occur in long COVID's wake, including unemployment, relationship troubles, financial strain, and social isolation. Some survivors lose health insurance, or never had it, and can't access mental or physical healthcare, which is another risk factor for suicide.
Research also suggests that brain inflammation, which COVID can cause, may increase a person's risk for depression(opens in a new tab) and suicidal thinking(opens in a new tab). Indeed, one preliminary study found(opens in a new tab) that long COVID may be associated with suicide risk and concluded that "psychiatric disorders and suicide risk should be systematically assessed in patients with long COVID."
While there are long COVID patients who don't contemplate suicide, many with severe or debilitating long COVID describe how the illness suddenly destroys their carefully built lives. Some have no prior experience with mental illness, much less with suicidal thoughts, and feel afraid as they struggle to process these feelings. When they confide in each other, the effect can be lifesaving.
The prominent suicide death of former television writer Heidi Ferrer, who had experienced long COVID, drew attention(opens in a new tab) to the possibility of heightened risk when it became public in June 2021. In the public Survivor Corps Facebook group(opens in a new tab), where Ferrer was a member, people routinely respond with kindness and understanding to posters who, plagued by debilitating symptoms, feel they can't go on. Dozens of replies effectively say, in unison, "We've been there, too — just hold on." Some post contact information for the 988 Suicide and Crisis Lifeline(opens in a new tab), or other crisis lines. The group currently escalates explicitly suicidal posts to Facebook's moderation team, which reviews them and may reach out to the poster with resources.
Survivor Corps founder Diana Güthe calls the group of nearly 200,000 people the "epicenter of hope" for long COVID patients. But as Survivor Corps, the nonprofit organization, winds down its official activities for lack of funding, it will also stop paying moderators to manage the Facebook group, leaving uncertainty about how it will continue given that each post is personally pre-approved.
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A separate, much smaller and private Facebook group(opens in a new tab) run on behalf of the federal Disaster Distress Helpline also offers a peer support community for long COVID patients, as do several other private Facebook groups. Many long COVID survivors find support groups like these by luck, either seeking them out online or by receiving treatment at long COVID clinics, which typically have lengthy waiting lists.
The Critical Illness, Brain Dysfunction and Survivorship (CIBS) Center(opens in a new tab) at Vanderbilt University Medical Center effectively became a long COVID clinic during the pandemic and hosts several weekly video support groups. Current members live across the U.S., and receiving care at CIBS isn't a requirement to join, but the waitlist is currently 50 people long.
"When you look over the long COVID landscape it can feel very hopeless," says Dr. James C. Jackson, a neuropsychologist at Vanderbilt University Medical Center who runs the support groups and notes that members talk about positive developments like improved symptoms or becoming more resilient. "So to be in a community with people where you're hearing stories of overcoming...it really adds a lot of hope."
Finding support from other long COVID survivors
Jackson says that in addition to chronic health issues, survivors grapple with day-to-day uncertainty about their well-being, livelihood, and future; medical professionals who may not believe, or cannot say, that there's anything wrong; social isolation because they're housebound or fear getting infected again; and, overall, a total dismantling of their identity.
"Part of the dynamic is life gets turned on its head pretty quickly for these folks and they don't know how to make sense of it," says Jackson, author of the forthcoming book Clearing the Fog: From Surviving to Thriving with Long Covid—A Practical Guide(opens in a new tab).
Three of the CIBS support group's members interviewed by Mashable, who requested anonymity to protect their privacy, say participating is vital for their mental health.
Marie, 57, lived with depression and anxiety that were treated with medication and therapy, but she never experienced suicidal thoughts prior to being hospitalized with COVID in March 2020. Among other medical conditions, she now has cognitive impairment, constant fatigue, and postural orthostatic tachycardia syndrome (POTS), a blood circulation disorder that can cause lightheadedness, fainting, and rapid heartbeat.
"I had a life that died, and I was like born again with this long COVID," she says.
"I had a life that died, and I was like born again with this long COVID."
While long COVID exacerbated Marie's depression and anxiety, the arrival of suicidal thoughts still came as a "scary" shock. But when she told the group she was spiraling, others provided a "lifeline" through their understanding and compassion, Marie says. When she came close to acting on her suicidal thoughts last fall, Marie sought Jackson's help and checked into a weeklong inpatient psychiatric program at Vanderbilt University Medical Center, a decision she describes as the "hardest but best thing in my life."
Suzanne, 46, says that every long COVID survivor should have access to a support group like the one offered through CIBS. Suzanne, whose husband of 20 years died of his COVID infection, experiences POTS, migraines, cognitive impairment, fatigue, and joint and muscle pain, among other health issues. For the past year and a half, she's brought her concerns to meetings and has never felt gaslit or dismissed. She also finds it rewarding to support others.
Alex, a 23-year-old former competitive runner who surrendered his dreams of a career in the sport after contracting long COVID, experiences unpredictable flares in his symptoms, which also come with intense waves of depression, anxiety, and, sometimes, suicidal thinking. He says that the group rallies around members "going through the ringer," which makes him feel less alone.
"This community kind of rises together to hold this person up when they can no longer hold themselves up," says Alex.
Seeking solutions for long COVID and suicide
For Sam Norpel, the second bout of suicidal thoughts, about a year after her COVID infection, convinced her to share those feelings with her medical care team. She also told close family members how badly she was struggling, despite improvements to her physical health.
Though she experiences speech issues, migraines, chronic fatigue and pain, and dysautonomia(opens in a new tab), a term used to describe problems with the body's autonomic nervous system, Norpel has joined the board of the nonprofit organization Pandemic Patients(opens in a new tab), in a limited capacity. She says this work, along with continuing to communicate online with other survivors, gives her a long-missing sense of purpose.
Dr. Doreen Marshall, vice president of mission engagement for the American Foundation for Suicide Prevention, says that hearing survivors' stories is critical to understanding how best to support them. She emphasizes that experiencing suicidal thoughts for the first time can be confusing and frightening. People may feel ashamed of having those thoughts. But she encourages survivors to think of suicidal feelings, which involve the brain, like any other health indicator that suggests something isn't functioning optimally, such as high blood pressure.
While Marshall says there's not enough research to demonstrate a link between long COVID and heightened suicide risk, she says it's important that survivors do not suffer alone, and that employers and policymakers meaningfully address and support patients' mental health. Friends and family can also play a crucial role by checking in with loved ones who have long COVID, including asking if they're having thoughts about suicide(opens in a new tab) if they notice talk of hopelessness, feeling like a burden, or sudden changes in mood or behavior.
"These kinds of illnesses are often invisible to other people...most people look at someone and do not realize they may be struggling with long COVID symptoms, and particularly mental health symptoms as a result," she says.
"These kinds of illnesses are often invisible to other people."
Marshall recommends that survivors experiencing intense suicidal thoughts contact a crisis line. While some survivors express skepticism about hotlines, partly fearing that those on the other end won't believe long COVID is real, Crisis Text Line(opens in a new tab) and the 988 Suicide and Crisis Lifeline(opens in a new tab) told Mashable that their staff are ready to offer support. Crisis Text Line provides its volunteers with separate tip sheets about chronic pain and the long-lasting effects of COVID. The 988 Suicide and Crisis Lifeline has resources related to COVID's impact on families, mental health, and managing relationships.
Dr. Jessi Gold, a psychiatrist and an assistant professor in the department of psychiatry at Washington University School of Medicine whose patients include those experiencing long COVID, says healthcare professionals should act with more sensitivity and compassion toward survivors. While mental healthcare can be very helpful for patients, Gold says physicians should resist the impulse to send them to a therapist solely because medical tests haven't pointed to a conclusive physical diagnosis. Gold says simply telling patients, "I don't know what this is, but I believe you," would be far better than indicating that their physical symptoms are essentially "all in their head."
"A lot of people turn to the internet and peer support communities because they want to know they're not alone," she says. "They want to know that people see them and believe them. A lot of times that comes from peers, and doesn't come from medicine."
At Vanderbilt University Medical Center, Jackson, who is also a research professor of medicine in the Division of Allergy, Pulmonary, and Critical Care Medicine, works with patients and support group members to identify what aspects of their condition they can live with, even if they'd rather not. Using treatment known as Acceptance and Commitment Therapy, the aim is to lessen their emotional reactivity and find a way to "co-exist" with a certain level of discomfort or pain.
Support group member Suzanne has found this strategy helpful: "COVID and the devastation it leaves behind is definitely unmeasurable. But just trying to practice acceptance is not the same as giving up, or giving in, either."
Jackson also teaches a strategy called "unhooking" wherein patients note thoughts that steal their focus and sap their hope, like the thought that things will never get better. Instead of becoming swept up in their implications, patients learn to simply observe them. And Jackson urges survivors to find and embrace the parts of themselves, from before the infection, that still exist.
Marie knows she doesn't want to end her life, but the side of her brain "that isn't quite working right" can insist otherwise in her darkest moments, which is why support from other long COVID survivors has been so critical to her survival.
"You're just at the end of your rope," she says, "and you need someone to help you at the end of that rope."
UPDATE: Apr. 1, 2023, 11:23 a.m. EDT This story has been updated to correct an error in Dr. Jessi Gold's quote. Her statement was about the role of peer support communities, not patient-supported communities.
If you're feeling suicidal or experiencing a mental health crisis, please talk to somebody. You can reach the 988 Suicide and Crisis Lifeline at 988; the Trans Lifeline at 877-565-8860; or the Trevor Project at 866-488-7386. Text "START" to Crisis Text Line at 741-741. Contact the NAMI HelpLine at 1-800-950-NAMI, Monday through Friday from 10:00 a.m. – 10:00 p.m. ET, or email [email protected](opens in a new tab). If you don't like the phone, consider using the 988 Suicide and Crisis Lifeline Chat at crisischat.org(opens in a new tab). Here is a list of international resources(opens in a new tab).
