COVID long-haulers are killing themselves as symptoms become too painful to bear - but support groups offer relief

·7 min read
Coronavirus sign Ontario Canada
A sign for a COVID-19 isolation center in Markham, Ontario on Wednesday. Creative Touch Imaging Ltd./NurPhoto via Getty Images
  • Experts say there may be a link between severe post-COVID symptoms and increased suicide risks.

  • Texas Roadhouse CEO Kent Taylor's death last month highlighted COVID-19's impact on mental health.

  • Severe tinnitus and continuous "brain fog" are among the "long-haul" symptoms of COVID-19.

Months-long suffering from "long-haul" COVID-19 symptoms has been linked to severe depression and anxiety and even suicidal ideation.

Texas Roadhouse CEO Kent Taylor's death by suicide last month highlighted the coronavirus' severe toll on mental health.

A statement released by Taylor's family linked his death to lingering symptoms he was experiencing including severe tinnitus, or ringing in ears.

"Kent battled and fought hard like the former track champion that he was, but the suffering that greatly intensified in recent days became unbearable," the statement said.

Taylor was among many who have struggled to cope with the debilitating long-term effects of COVID-19, which in addition to tinnitus include fatigue as well as constant "brain fog" and memory loss.

These symptoms - and how people can manage them in the long term - are still being studied, as the number of known COVID-19 cases in the US alone passes 30 million.

When physical stressors turn into psychological ones

Research by Leo Sher, a professor of psychiatry at the Icahn School of Medicine at Mount Sinai, noted that COVID-19 survivors could continue to tangle with headaches, dizziness, seizures, and other neurological conditions long after their diagnosis.

Those physical stressors, Sher warned, can often morph into psychological ones.

"COVID-19 survivors should be regarded as individuals at elevated risk for suicide," Sher wrote in an April paper. "Recovered COVID-19 patients need to be screened for depression, and many coronavirus disease survivors will need long-term psychological interventions."

Dr. Jill Stoller, a pediatrician from New Jersey, contracted COVID-19 in March 2020. She recovered from the infection but could never quite shake off some of the symptoms. Stoller, The New York Times reported in March, struggled with brain fog and depression.

The 59-year-old spent months trying to push her way through to a full recovery but continued to feel weak and short of breath.

After intensively researching the experiences of so-called COVID-19 long-haulers, Stoller became convinced she would never fully recover.

"She had this amazing ability to bounce back from anything, but this time was different," her son, Travis Stoller, told The Times.

Six months after contracting COVID-19, Stoller took her own life on November 29.

"I don't think any of us realized how hopeless she felt," her son said. "But she was absolutely convinced this virus had completely changed her as a person."

As noted in a Harvard Medical School blog post, some people who recover from COVID-19 are left with clear damage to their lungs, heart, kidney, or brain. But the long-haulers are in their own category, with symptoms that linger for months including constant headaches, fatigue, prolonged body aches, and inability to sleep.

The New York Times also reported that long-haulers need not have suffered from intense COVID-19 symptoms to experience long-term effects - and some cases actually get worse over time. Long-term symptoms can have a devastating impact on one's mental health, making depression and suicidal ideation a risk of the recovery process.

Recent research published in the European Respiratory Journal found as well that long-haulers were at significant risk of experiencing depression and post-traumatic stress disorder.

"Our results show very clearly that among those who we provided post-COVID care for, many have experienced some level of poor mental health during their recovery," said Dr. Swapna Mandal, a consultant respiratory physician at the Royal Free London NHS Foundation Trust who was the lead researcher on the study.

"All health professionals who are involved in the care of those with long-COVID must be aware of this and should actively screen patients for symptoms, even in those with pre-existing mental health issues."

Additionally, studies that monitored COVID-19 patients 21 days after their diagnosis and 60 days after discharge showed that some 50% to 80% of patients continued to not feel well up to three months after they first were diagnosed, months after tests no longer detect a live virus in their bodies.

Some medical professionals liken long-haul COVID-19 symptoms to those of myalgic encephalomyelitis/chronic-fatigue syndrome. A 2015 study from Kings College London on people with ME/CFS suggested they were six times as likely to die by suicide than the general population.

An uphill battle just to be believed

Both those with long-haul symptoms and with ME/CFS have described struggling not only with managing symptoms, but also with being believed by their peers and loved ones.

Lauren Nichols contracted COVID-19 in March 2020 and has since dealt with long-haul symptoms of brain fog and forgetfulness, along with the inability to do more than one thing at a time.

She told The New York Times in January that she had contemplated suicide because friends, family members, and even her doctor didn't believe she was still sick.

The desire to be believed is a core issue for Denise Kelley, a 29-year-old from Massachusetts, who said she was "constantly on the verge of having a breakdown" because no one would believe her. She told Insider that she used to be active, and loved going to the gym, but hadn't left her room in close to a month because of constant brain fog after receiving a COVID-19 diagnosis in January.

"You feel so alone, and no one seems to understand why you're unable to function," she said. "I'm not lazy. I'm struggling with something even I can't quite comprehend or come to terms with."

A ray of hope

Christine Moutier, the American Foundation for Suicide Prevention's chief medical officer, told Insider that "encouraging" numbers regarding suicide rates were being reported across the US.

"While suicide risk factors, such as anxiety, social isolation, economic stress, and suicidal ideation have increased during the pandemic, it is important for everyone to understand that suicide risk is complex and protective factors also play a powerful role," Moutier said.

"While we do not yet have national suicide data from the full year of 2020, early data from Florida, Massachusetts, Utah, and Hawaii show that the overall suicide rates declined or saw no change in 2020, compared with the previous year."

Some COVID-19 long-haulers have found ways to cope: online groups on social-media platforms like Facebook.

Beth Lilla-Idrogo, 50, from Texas, told Insider that the COVID-19 support group she joined after her diagnosis in January was helping her cope with some of her symptoms - which include heart palpitations, inflammation, hearing changes, and brain fog.

"The group helps because I know I'm not alone. I read the remedies others tried out and things that have helped, and give them a shot," she said.

For others, these online groups are a source of emotional support.

"I don't know anyone personally who is struggling with post-COVID symptoms, so seeing how many others are having the same symptoms helps validate my own," said Catherine Nilson, 35, who lives in Pennsylvania and received a COVID-19 diagnosis in December. "Like, this is actually happening: I'm not overreacting or imagining it."

Nilson, who is a member of a COVID-19 long-haulers support group for women, added that the group helped her link some of the symptoms she was experiencing, like excessive thirst, to being a post-COVID-19 manifestation - something that helped alert her doctor to run the appropriate tests.

"Luckily, I have a strong support system and I'm just taking things a day at a time and trying to remain positive that things will improve," she said.

Read the original article on Insider