Patient peer support groups and communities built by Long COVID survivors first appeared online in 2020. At first, the primary point was validation; people with lingering, recurring, and even new symptoms following a COVID-19 illness were belittled and abandoned by both healthcare providers and legislators, leaving patients scared, confused, and with nowhere to turn for help.  

Three years later, even though Long COVID is a recognized syndrome, and millions of dollars of both private and public funds have been spent on research and resources, many long-haulers are still suffering, not only from their ongoing physical and cognitive symptoms, but also from the frequent secondary losses that occur for many with chronic diseases: unemployment and financial complications, relationship rifts, barriers to needed care, and social isolation. 

These compounded losses can lead, and have led, tragically to anxiety, depression, and despair, sometimes resulting in suicidal thoughts and actions. Fortunately, there is direct evidence from patients and advocates that the support of online survivor communities has provided hope, sanctuary, and a sense of purpose to many.* 

Long COVID and suicide 

Suicidal thoughts and actions often have multiple origins, aggravating factors, and catalysts. Chronic, debilitating illnesses, particularly ones like Long COVID with few reliable treatments and no cure on the horizon, can easily lead people to the edge of despair, and are a known risk factor for suicide. 

Studies also indicate that brain inflammation, which is now recognized as a common result of COVID, can increase the risk of depression and suicidal thinking. While many Long COVID patients don’t contemplate suicide, significant numbers describe the fallout from the illness as turning their lives upside-down, to the point where they feel as though they’re living someone else’s life. Confiding in someone who understands and validates your experience can literally save lives. 

If you’re having suicidal thoughts, dial 911, or text 988 for the Suicide and Crisis Lifeline

How do online support groups help?

The Survivor Corps Facebook group is just one online community that offers hope and solidarity to its members, which number about 190,000. When a fellow sufferer shares that they don’t think they can go on, words of kindness, encouraging them to “hold on” pour in. 

While the number of suicides that have been, or can be, directly linked to Long COVID are not known, Nick Güthe, former husband of Heidi Ferrer, a TV writer who killed herself in 2021 after struggling for more than year with severe symptoms, says that after the news of Heidi’s suicide became public, he received hundreds of emails from other sufferers who shared that they struggled with similar thoughts.

Lifting up fellow long-haulers

“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 patient support groups at the university’s Critical Illness, Brain Dysfunction and Survivorship (CIBS) Center. 

He reports that group members often share encouraging developments such as improved symptoms or increased resilience. “So to be in a community with people where you’re hearing stories of overcoming…it really adds a lot of hope.”

In interviews, three CIBS support group members described the positive effects of group participation on their mental health.

• Marie, 57, didn’t have suicidal thoughts before being hospitalized with COVID in March 2020. Among other medical conditions, she now has cognitive impairment, constant fatigue, and postural orthostatic tachycardia syndrome (POTS). When she told the group of her downward spiral, she said, the other members provided a “lifeline” through their understanding and compassion.
• Suzanne, 46, suffers from POTS, migraines, cognitive impairment, fatigue, and joint and muscle pain, among other symptoms. In the year and half that she’s participated in CIBS, she said, she’s never felt dismissed or gaslighted, and it feels rewarding to help support others in the same way that they support her. 
• Alex, a 23-year-old former competitive runner, whose unpredictable symptom flares are accompanied by severe anxiety, depression, and, sometimes, suicidal thoughts. Of CIBS he said, “This community kind of rises together to hold this person up when they can no longer hold themselves up.”

Online peer support resources

Just a few of the online peer support communities available to COVID long-haulers include:

• CIBS (holds several weekly virtual support group sessions)
• Responsum for Long COVID (download the free app, set up an account, and click on Community to participate in Community Chat, the peer support forum)
• Survivor Corps (while the group’s website stopped being updated as of March 2023, the Facebook group is still active)
• Survivors and Responders of the COVID-19 Pandemic

In addition to supporting fellow long-haulers, many people with Long COVID find a renewed sense of purpose by participating in patient registries such as the Long Covid Alliance and UF Health’s Registry for People with Long COVID to help advance research, and by getting involved in patient advocacy on local, state, and federal levels. 

*Ruiz, R. (2023, April 1). Long COVID and suicide: How patients are helping each other in their darkest hour. Mashable. https://mashable.com/article/long-covid-suicide-mental-health