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We Need a Better Understanding of Long-Haul COVID and Suicidality

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Editor's Note

If you experience suicidal thoughts, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741741.

One day, I messaged greetings to a friend who also has long-haul COVID, but I didn’t hear back from him immediately.

It wasn’t until the next day when I recognized the familiar, friendly Facebook new message ping that I found in my inbox his messages, where he recounted to me his ordeal.

He described how he experienced a TIA, or transient ischemic attack — also known as a mini stroke. His brother and step brother had to give him CPR while his family waited for an ambulance to arrive. But he didn’t recollect any of it.

“I just don’t know how much more I can take,” he cried.

His confession called me back to June 2021, when I was in my own fight against long-haul COVID symptoms, including struggling to breathe with San Antonio’s high molds, to which I had become severely allergic. Day after day, I battled with the environmental allergens and there was no reprieve in sight. I was doing everything I could to fend off any exposure to mold spores and my situation became so dire that I even covered my windows with cloth. My luxury apartment community was obsessed with landscaping the lush courtyard my balcony overlooked, and the maintenance team was diligent about cleaning the resort-inspired pool and removing debris and leaves daily, which, for me, meant more pollen particles floating nearby and worsening allergies. I often needed to retreat to the bathroom until the cleanup was complete.

I had uttered the same words to my mother, I recalled, explaining to her that I was not being pessimistic about my illness; I was s-u-f-f-e-r-i-n-g. I am a resilient person and have already overcome multiple hardships in life, but this illness — this long-haul COVID monster — I simply could not defeat. It was ruthless and I was in agony, and no matter how hard I tried, I was losing the battle.

Two days later, while still in the hospital for the mini stroke, my friend experienced for the first time a grand mal seizure, which he explained to me looks much like what you think of when you hear the word seizure: body shaking due to violent muscle contractions and a loss of consciousness. Grand mal seizures can be life threatening and, in fact, his body went into early sepsis, a state in which the body releases chemicals into the bloodstream to fight infection.

I thought about how he said he’d already felt like giving up after the mini-stroke. He had survived the TIA and seizure, but these new developments would hinder any recovery progress.

I also thought about the millions of other long-haulers across the world who may feel or have felt like giving up the fight, too. Some even had taken action.

Long-Haul COVID and Suicidality

In March 2021, Kent Taylor, the CEO of Texas Roadhouse, a major restaurant chain, died by suicide after struggling with long-haul COVID symptoms, including tinnitus. Another high-profile long-haul COVID death followed in June 2021 when the news media reported the suicide of Heidi Ferrer, a writer known for her work with the late 1990s TV show “Dawson’s Creek.” Her husband, Nick Guthe, shared that Ferrer had been struggling with long-haul COVID symptoms for 13 months. Guthe has since advocated for the research and treatment of long-haul COVID. On January 12, The Herald reported that a Scottish doctor and reproductive clinical researcher, Professor Fiona Denison, died by suicide, after battling long-haul COVID for two years.

The deaths of Taylor, Ferrer and Denison have prompted discussion about the connection between long-haul COVID and suicide. Is suicidality a risk of long-haul COVID?

Researchers are now beginning to study the mental health of patients who have recovered from COVID-19 and those living with long-haul COVID. An expert psychiatrist associated with the James J. Peters Veterans’ Administration Medical Center, Columbia University College of Physicians and Surgeons and Mount Sinai Icahn School of Medicine, estimates those with long-haul COVID are at an increased risk for suicidality due to the brain inflammation damage associated with the virus as well as symptoms from its psychiatric, neurological and physical effects.

The American Psychological Society considers suicidality to be “the risk of suicide, usually indicated by suicidal ideation or intent, especially as evident in the presence of a well-elaborated suicidal plan.” In fact, patient-led and academic research published in The Lancet named suicidality as a long-haul COVID symptom that warrants more research, recognizing that it has largely been omitted from discussions.

Later when I asked my friend why he contemplated death, he touched upon some of the themes I echoed and witnessed daily among long-haulers in online support groups or on Twitter.

Long-haulers are screaming from the tops of our damaged lungs in an effort not only to warn others that long-haul COVID is a risk, but to cry for more research, funding, treatment options, and social support protections and services.

“I’m tired of being isolated.”

The isolation associated with long-haul COVID comes in all forms. In some cases, those who are living with long COVID may isolate from friends and loved ones because we are too unwell to interact, or conversations — face-to-face or even those over text — may be too taxing.

Additionally, we may isolate to protect ourselves from contracting the latest COVID-19 variants, as we do not want to make our situations worse, or even fatal. Even more, others may stay away from us for fear that we are contagious or shy away because they do not want to face their own vulnerability.

“I’m tired of flare-ups with no explanation.”

The unknown can be maddening and terrifying, and there are many aspects of long-haul COVID that remain inexplicable. “Nothing is more frightening than a fear you cannot name,” wrote Cornelia Funke, young adult fiction author.

While patients have named long-haul COVID, the many symptoms and illnesses associated with it are not defined. There is yet to be a map for how to navigate this virus and overcome it. In the meantime, patients are relegated to monitoring and troubleshooting symptoms without an overall understanding of the virus.

“I can’t [believe] how the medical community doesn’t give a f***.”

The patient experiences of those seeking diagnoses or treatment for long-haul COVID can range from the supportive and validating to the horrific and contested. As patients who are managing through long-term, debilitating illness, we cannot fathom how the medical community has remained disjointed — even broken— while millions of people living with long-haul COVID continue to suffer. We understand that doctors and nurses are humans, too, as The Atlantic writer Ed Yong’s recent article on the mass exodus of healthcare workers in the U.S. reminds us. But add in the motives of governments, insurance companies, the pharmaceutical industry, corporations and schools — and it results in a global healthcare breakdown. Yet hope is dwindling and our patience is expiring.

“I’m tired of the [world] not taking this s*** seriously.”

While COVID-19 and long-haul COVID continue to be widely politicized in the media and on platforms like Twitter and Facebook, the debates about masking, schooling, and workplace standards continue. It is distressing for long-haulers to sit on the figurative sidelines and watch the debates ensue.

Some able-bodied individuals don’t want to wear masks. Others don’t believe COVID-19 is real. Meanwhile, long-haulers are screaming from the tops of our damaged lungs in an effort not only to warn others that long-haul COVID is a risk, but to cry for more research, funding, treatment options, and social support protections and services. HELP US.

“I’m tired of no longer being human.”

This final protest is probably the most difficult. Personally, I am two years into this illness and as the months roll on, I am coming to understand that transitioning to a life with chronic illness is accompanied by innumerable losses — partners or spouses, friends, employment or school, money, homes, goals, dreams, and hobbies. These losses are on top of physical abilities that have diminished too.

It has been the sorrow of my life to say goodbye to important parts of my identity and to enter a realm — possibly for the rest of my life — of subsistence rather than existence. Perhaps it would be more bearable if we knew help was on the way. Alas, we don’t know if it is.

Suicidality and Chronic Illness

Research and advocacy group Body Politic reminded the public that suicidality and depression are not uncommon in people living with chronic illness, offering an explanation of why this change in the mind occurs. In response to Taylor’s death in 2021, the group published the following statement:

“Like many issues long COVID patients face, suicidal ideation and depression are not unique to the experience of having Covid-19. People living with chronic illnesses of all types are twice as likely to experience depression and anxiety than the general population. Chronically ill young people aged 15–30 are three times more likely than their peers to attempt suicide. No matter what stage in life a person becomes chronically ill, the sudden changes to our physical bodies, our social lives, and our imagined futures can be difficult to face.”

My friend is back home now, and following up with doctors about his prognosis, while my own doctor has issued me two more diagnoses. The outlook, whether positive or dismal, is one that we grapple with every day.

There is no doubt it’s useful to know that some people living with long-haul COVID are more at risk for suicidality for many reasons. Even more, this fact underscores why it is important — no, it is a matter of life or death — that our global communities do not leave long-haul COVID patients isolated and in the darkness, but that we do everything in our power to be a guiding light.

If you are in the U.S. and are in crisis and having thoughts about harming yourself or another, please call the National Suicide Prevention Lifeline at (800) 273-TALK (8255). The lifeline also offers online chat support, 24 hours a day, seven times a week. If you are located outside the U.S., please share your country’s resources in the comments.

Getty image by Arman Zhenikeyev

Originally published: May 23, 2022
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