June 13, 2022 10:44 AM EDT

Last year, Diana Berrent—the founder of Survivor Corps, a Long COVID support group—asked the group’s members if they’d ever had thoughts of suicide since developing Long COVID. About 18% of people who responded said they had, a number much higher than the 4% of the general U.S. adult population that has experienced recent suicidal thoughts.

A few weeks ago, Berrent posed the same question to current members of her group. This time, of the nearly 200 people who responded, 45% said they’d contemplated suicide.

While her poll was small and informal, the results point to a serious problem. “People are suffering in a way that I don’t think the general public understands,” Berrent says. “Not only are people mourning the life that they thought they were going to have, they are in excruciating pain with no answers.”

Long COVID, a chronic condition that affects millions of Americans who’ve had COVID-19, often looks nothing like acute COVID-19. Sufferers report more than 200 symptoms affecting nearly every part of the body, including the neurologic, cardiovascular, respiratory, and gastrointestinal systems. The condition ranges in severity, but many so-called “long-haulers” are unable to work, go to school, or leave their homes with any sort of consistency.

The statistics around Long COVID and mental health are striking. A report published in eClinical Medicine last year found that about 88% of Long COVID patients experienced some form of mood or emotional issue during the first seven months of their illnesses. Another study, published in BMC Psychiatry in April, found that people with post-COVID conditions were about twice as likely to develop mental health issues including depression, anxiety, or post-traumatic stress disorder as people without them. COVID-19 survivors were also almost 50% more likely to experience suicidal ideation than people who hadn’t had the virus, according to a study published in February in the BMJ.

Exploring the body-brain connection of Long COVID

Understanding the link between Long COVID, suicide, and mental health issues is more complicated than it might seem. While some people do develop depression, anxiety, or other mental health issues after their diagnoses, others are suffering from physical symptoms that have psychological side effects or that are mistaken for mental health problems, experts say.

The virus that causes COVID-19 has well-documented effects on the brain, which can potentially result in psychiatric and neurologic symptoms, says Dr. Wes Ely, who treats Long COVID patients at Vanderbilt University Medical Center. “We’ve been collecting brains of some patients who didn’t survive Long COVID,” he says. “We’re seeing inflammation and ongoing cellular abnormalities in these brains.”

Those changes to the brain can have profound effects, possibly including suicidal thinking and behavior. “There is a high probability that symptoms of psychiatric, neurological and physical illnesses, as well as inflammatory damage to the brain in individuals with post-COVID syndrome, increase suicidal ideation and behavior in this patient population,” reads a January 2021 article in QJM: An International Journal of Medicine. Research published as a preprint last year (meaning it had not been peer-reviewed) also found differences between “post-COVID depression” and typical depression, including higher rates of suicidal behavior—suggesting “a different disease process at least in a subset of individuals.”

Long COVID can also be incredibly painful, and research has linked chronic physical pain to an increased risk of suicide. Nick Güthe has been trying to spread that message since his wife, Heidi Ferrer, died by suicide in 2021 after living with Long COVID symptoms for about a year. Among her most disruptive symptoms, Güthe says, were foot pain that prevented her from walking comfortably, tremors, and vibrating sensations in her chest that kept her from sleeping. More than 40% of Long COVID patients experience moderate-to-severe sleep disturbances, according to recent research, and insomnia has been linked to suicidal thinking and behavior.

“My wife didn’t kill herself because she was depressed,” Güthe says. “She killed herself because she was in excruciating physical pain.”

Since speaking out about his wife’s death, Güthe has heard from numerous families with similar experiences. Recently, he says, he’s noticed a grim change. “I used to get contacted by people on social media who were suicidal,” he says. “Now I’m getting reports of suicides. I had three in the last week.”

During that time, there’s been little tangible progress for long-haulers. Doctors still don’t understand much about the condition or how to treat it. “You’ve got people now who have been suffering with Long COVID for almost two years,” Güthe says.

Part of the problem is that in the U.S., illnesses are typically considered either physical or mental, but not both, says Abigail Hardin, an assistant professor of psychiatry and behavioral sciences at Rush University who works with seriously ill patients, including those with Long COVID. “In reality, all of these things are actually very bidirectional,” she says. “Everything is integrated.”

In part because the medical system often fails to accommodate that complexity, many chronic-disease patients are misdiagnosed or assigned labels that don’t capture the full reality of their conditions.

Myalgic encephalomyelitis/chronic fatigue syndrome, a post-viral condition so similar to Long COVID that many long-haulers meet its diagnostic criteria, is one example. Decades ago, doctors widely and incorrectly believed that patients’ symptoms—including crushing fatigue, often exacerbated by physical activity—were all in their heads. Even today, ME/CFS patients—as well as those with similar conditions, like chronic Lyme disease and fibromyalgia—are often misdiagnosed with mental-health issues because their providers don’t understand their conditions. Suicide is also disproportionately common among people with ME/CFS, research shows.

Adriane Tillman, who has had ME/CFS for a decade and works with the advocacy group #MEAction, remembers trying to get doctors to understand the extent of her physical symptoms, which at first kept her bedridden—only to be diagnosed with depression.

While Tillman was grieving for the life she’d led before she got sick, she says reducing her debilitating condition to depression was too simplistic. “I just thought, okay, I’m not explaining this enough,” she says. “I brought my husband [with me to the doctor]. I brought my dad. I brought a Powerpoint presentation.” Still, the best she got was an increased dose of antidepressants.

Many Long COVID patients report similar experiences. Teia Pearson faced disbelief from doctors and loved ones after developing Long COVID following a March 2020 case of COVID-19. “The doctor’s calling you crazy. Your family and friends are…treating you like you’re crazy. That really messes with your head,” she says.

Jaime Seltzer, director of scientific and medical outreach at #MEAction, says research on mental health needs to better account for the realities of chronic illness. For example, many depression screening questionnaires ask if the individual struggles to get out of bed in the morning, but fail to distinguish between feeling unable to get up and being physically unable to get up. “Until we have a depression scale and an anxiety scale for people who are physically disabled…people with physical disabilities will continue to be misinterpreted as depressive or anxious even when they are not,” Seltzer says.

A need for solutions

Berrent says there’s an immediate need for a suicide hotline specifically for people with Long COVID, since operators at other services may not know about or understand the condition. More research into Long COVID treatments would also go a long way, she says, because it would give people hope as well as eventual relief from their often-devastating symptoms.

Marissa Wardach, whose ex-husband John died by suicide in March after developing Long COVID the prior summer, wishes there had been more options available to him. When he spoke with doctors, she says, “they kind of just shrugged it off and said, ‘Sorry, we don’t really know much about it,’” she remembers. “That shattered any kind of hope he had.”

Wardach wonders how things might have gone if clinicians had referred John to specialty treatment centers or patient support groups, rather than sending him on his way. But even when patients are connected to the relatively few Long COVID treatment centers that exist, they often face months-long waits for an appointment. “Long COVID patients feel they’ve been abandoned, in many circumstances,” Ely says. “There are too many [parts of] the country where there’s not a Long COVID clinic.”

Emerging evidence about what does seem to work for patients also isn’t always shared widely among doctors. Güthe, for example, learned from a physician months after his wife’s death that a drug called trazodone may have helped her sleep despite her chest vibrations—something her own doctors didn’t mention. “Every general practitioner in the United States should be up to date on the basic guidelines for helping patients with Long COVID deal with the major symptoms,” he says.

Seltzer says all doctors and mental health practitioners also need a better understanding of what will—or will not—help people with Long COVID and other similar chronic diseases. Approaches like cognitive behavioral therapy, which focus on changing thought patterns, often aren’t helpful for patients with very real physical symptoms, she says. “Clinicians need to be aware that this is a thing, and they need to not be dismissive about it,” Seltzer says. They need to “not attribute it to stress, and therefore place the responsibility on the patient to calm themselves down, and not attribute it to an incorrect manner of thinking.”

These shortcomings point to structural issues in the U.S. medical system, Hardin says. Ideally, physical and psychological care wouldn’t be treated as distinct, and patients could get holistic evaluations from any provider. At the very least, she wishes each person diagnosed with a chronic condition had a mental health professional on their care team from the very beginning. But, she says, that’s less common than it should be.

“So much of what we’re seeing with COVID and the fallout of it is not related to individual providers,” she says. “A lot of it is very structural. This is an opportunity for the country to grow and fix some of the systemic issues that have been under the surface of U.S. medicine.”

If you or someone you know may be contemplating suicide, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text HOME to 741741 to reach the Crisis Text Line. In emergencies, call 911, or seek care from a local hospital or mental health provider.

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Write to Jamie Ducharme at jamie.ducharme@time.com.

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