3 people with severe mental illness share their journey through the pandemic

Updated June 20, 2022 9:02 a.m. ET

More than one in 20 Americans struggles with a serious mental illness such as schizophrenia, bipolar disorder, or severe depression with psychosis. Because these illnesses typically manifest in early adulthood, they disrupt school plans, burgeoning careers, dating, and relationships. As a result, this population was already socially isolated and disadvantaged even before the pandemic.

After COVID-19 began to spread, people with mental illness was found not only to be more susceptible to contracting the virus, but also more likely to die from it. In addition, the pandemic has dealt a severe blow to the the mental health of the worldwhile financial, political and racial tensions were high.

How did all of this impact those who were already living with the most severe forms of mental illness?

The short answer is: We don’t know yet. But the researchers and doctors say the fate of the patients largely depended on how many ‘protective factors’ they had – things like access to family, relationships, housing and continuing treatment psychiatric. At the same time, patients and doctors often noted that this was a group accustomed to a life interrupted by seizures and already had coping mechanisms to fall back on.

These are the stories of three people who shared their experiences of living during the pandemic with serious mental illness. Their surnames have been withheld to protect their privacy.

/Joe Anderson for NPR

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Joe Anderson for NPR

Rock

Peter is 41 years old and lives in Boston. But he grew up in Romania under the brutal regime of Nicolae Ceausescu in the 1980s, when food was scarce and freedom seemed non-existent.

“No one had privacy in communist Romania,” he says. Listening to broadcasts from Britain, as his mother did, was a crime. Government surveillance cameras were everywhere. One of his dissident family members was tortured and later died for speaking out.

“You were afraid of your neighbor, you didn’t know if he was a secret police informant,” says Peter.

In adolescence, the fear began to trigger psychosis and seizures so severe that they led to fainting and dislocated limbs. Loss of control and physical pain also led to depression. For Peter, paranoia was both a survival skill and a symptom of his illness.

The foreclosures continued, even after Peter moved to New Jersey and earned a degree in business and computer science. He was working in software development when, in 2015, he read a book by the Harvard cryptographer Bruce Schneier, warning of a lack of online privacy. The reading woke up familiar demons for Peter.

“I don’t want to live in communist Romania, I don’t want to go back to where I left,” he says.

During job interviews, he began asking potential employers about their privacy policies. None met his approval. So he refused to work and even lost his house. For three years he slept outside the Cambridge Public Library. Eventually he got treatment, an apartment, and reconnected with reality.

Then the pandemic hit.

The soup kitchens he relied on stopped hosting in-person dinners. He couldn’t connect with the people who helped him keep his reality in check. He began to see things in a different light. “Seeing people wearing masks, I thought they were trying to protect themselves from the intrusive cameras posted all over the city, all over the metro,” he says.

The boundaries between reality and illusion have blurred. Misinformation – about the virus and the vaccines – has made reality more slippery. Social media algorithms seemed to control political speech – and all of this validated his concerns about online tracking and privacy.

“If I read the news, which I do every day, I feel like I’m not sick — things are going exactly as Bruce Schneier predicted,” Peter says. “But then I read my diagnosis and he told me I have schizophrenia and I have paranoid delusions. So, I don’t know.”

Monique says the loss of her job and her longtime boyfriend contributed to her isolation.  She also says becoming the target of racial attack and losing three family members to COVID has left her searching for a safety net.

/Joe Anderson for NPR

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Joe Anderson for NPR

Monica

Monique is 12 years old when the mother she idolizes is weakened by cancer. It was then that his mental illness took hold.

“It was only when she started to get sick that I was confronted with multiple situations of violence”, explains Monique. The foster families physically abused her and she says an older brother physically and sexually abused her. As a teenager, she was hospitalized for psychosis brought on by depression and PTSD.

Now 29, Monique says the pandemic has pressed on many of those wounds.

“This pandemic hasn’t been fun for a lot of us,” she says of her circle of friends with serious mental health issues. COVID killed her grandmother, an aunt and a cousin. She lost her retail job. And for the first time she can remember, Monique was heckled because she was black. She says white supremacists spray painted her building in New York. The pressure escalated when her longtime boyfriend lost his job as a handyman. Then he left.

“It was my safety net,” she says. “When you live alone, it’s more overwhelming because it’s like, who are you going to express it to? You’re supposed to be able to tell your family and friends.”

All around her, friends with similar diagnoses tangled. People lost their jobs, along with the health insurance and access to treatment that came with them. They mourned alone their family members who died of COVID. Suddenly she became the only source of support for many as their mental health deteriorated.

“They didn’t want to go to the hospital and they were afraid to tell their family about it,” she says. This all got worse when Clubs, groups that provide social support and housing for people with mental illness, closed for a while. People lost their homes. A friend has been missing for months, and Monique has gone looking for her.

“Me and my dog ​​had to get in a $60 Uber; we had to go to her house to see if she was alive,” she says. Those living with serious mental illness without family support, she says, have learned to stick together. They’re bound in part by a shared understanding of what it’s like to be alone. “It’s as if people saw that you had something wrong and they were quick to isolate you and put you aside.”

Emile found that working from home, being able to sleep longer and spend more time with his family actually improved his mental health.

/Joe Anderson for NPR

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Joe Anderson for NPR

Emile

I first met Emile at his neighborhood cafe outside of Seattle in 2019, a few months before the pandemic hit the United States. He looked uncomfortable and unsure of himself. He was trying to recover from a suicidal episode of depression and was undergoing electroconvulsive therapy to induce seizures that reset his brain. It’s an aggressive treatment that can relieve the symptoms of bipolar disorder, but also erased many of his memories in the process. He kept saying “I don’t remember” conversations we had a few weeks before.

His wife, Kim, patiently reminded him of the experiences that tied him to his life. “In terms of job hunting, it’s very difficult to talk about your accomplishments or things you’ve done in an interview when you can’t remember them,” she explained. “Memories are very important, they’re autobiographical – it’s kind of like who you are.”

Memory loss wasn’t the only thing weighing on him. Emile had lost his job in software sales six months earlier. He worried about paying for daycare for their two daughters, but wasn’t quite ready to look for work. “Right now it’s pretty dark and I don’t have any plans because I’m going through a depression,” he said.

Then came the pandemic. His impact on Emile surprised me.

“With everything going on, I’m doing really, really well. I’m surprised how my health is doing,” he says now.

Losing the mad rush of the commute at either end of their days gave time and sanity back. This meant he could sleep longer and no longer had to pay for daycare. Teletherapy was convenient. Working from home allowed the family to spend more time together. For the first time, I hear Emile laugh.

Kim later tells me about everything that has improved her mental health and hers. “It forced a complete slowdown in modern life,” she explains.

And, she says, the pandemic has paled in comparison to the stressors they faced the previous winter. “If there is any benefit to his illness, [it’s] that we were somehow prepared to know how to handle our family in a crisis.”

Copyright 2022 NPR. To learn more, visit https://www.npr.org.

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