3 people with a serious mental illness share their journeys through the pandemic
More than one in 20 Americans struggled with serious mental illness even before the pandemic hit, and the shutdown of services and support networks took a toll. But many found ways to get through it.
Updated June 20, 2022 at 9:02 AM ET
More than one in 20 Americans struggle with a serious mental illness like schizophrenia, bipolar disorder, or severe depression with psychosis. Because these illnesses usually manifest in early adulthood, they interrupt 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 proved not only more prone to contract the virus, but also more likely to die from it. On top of that, the pandemic dealt a blow to the world's mental health, as financial, political and racial tensions ran high.
How did all of that impact those who were already living with the severest forms of mental illness?
The short answer is: We don't yet know. But researchers and doctors say how well patients fared depended largely upon how many "protective factors" they had — things like access to family, relationships, housing and continued psychiatric treatment. At the same time, patients and physicians often noted that this is a group accustomed to a life interrupted by crises, and who already had coping mechanisms to fall back on.
These are the stories of three individuals who shared their experiences of living through the pandemic with a serious mental illness. Their last names have been withheld to protect their privacy.
Peter is 41 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 felt non-existent.
"Nobody 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 an informer to the Secret Police," Peter says.
As a teen, fear started to trigger psychosis and epileptic seizures so severe it led to blackouts and dislocated limbs. The loss of control and physical pain also led to depression. For Peter, paranoia was both a survival skill and a symptom of his disease.
The seizures continued, even after Peter moved to New Jersey and graduated with business and computer science degrees. He was working in software development when, in 2015, he read a book by Harvard cryptographer Bruce Schneier, warning of a lack of online privacy. Reading it roused familiar demons for Peter.
"I do not want to live in communist Romania; I do not want to go back where I left from," he says.
In job interviews, he started grilling potential employers about their privacy policies. None met with his approval. So he refused to take a job, and even lost his home. For three years, he slept outside the Cambridge Public Library. Eventually, he got treatment, an apartment and back in touch 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 started to see things in a different light. "Seeing people wearing masks, I was thinking that they're trying to protect themselves from the invasive cameras posted all throughout the city, all throughout the subway," he says.
The lines between reality and delusion blurred. Misinformation — about the virus and vaccines — made reality feel slipperier. Social media algorithms seemed to control political discourse — and all of it validated his concerns about online tracking and privacy.
"If I read the news, which I do every day, I feel like I'm not ill — that things are unfolding exactly as Bruce Schneier predicted," Peter says. "But then I read my diagnosis and it tells me right there, that I am schizophrenic and have paranoid delusions. So, I don't know."
Monique was 12 when the mother she idolized was weakened by cancer. That's when her mental illness took root.
"It was not until she started to get sick that I was introduced to multiple abusive situations," says Monique. Foster families physically abused her, and she says an older brother assaulted her physically and sexually. By the time she was a teenager, she was hospitalized for psychosis, brought on by depression and PTSD.
Now 29, Monique says the pandemic pressed on a lot of those wounds.
"This pandemic was not fun for a lot of us," she says of her circle of friends with severe mental illness diagnoses. 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 for being Black. She says white supremacists spray-painted her New York apartment building. The strain piled on when her longtime boyfriend lost his handyman work. Then, he left.
"That 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 unraveled. People lost jobs — and the health insurance and access to treatment that came with them. They grieved alone for family members dying of COVID. Suddenly, she became the sole source of support for many, as their mental health spiraled.
"They didn't want to go to the hospital and they were scared to talk to their family about it," she says. That all became worse when clubhouses, groups that offer social and housing support for people with mental illness, closed for a while. People lost homes. A friend disappeared for months, and Monique went searching for her.
"Me and my dog had to get into 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, learned to stick together. They're bound together in part by a common understanding of what it's like to feel alone. "It's like people see that you have something wrong with you and they're quick to isolate you and push you to the side."
I first met Emile at his neighborhood cafe outside Seattle in 2019, a couple of months before the pandemic hit the U.S. He looked uneasy and unsure of himself. He was trying to emerge from a suicidal bout with depression, and undergoing electroconvulsive therapy to induce seizures that reset his brain. It's an aggressive treatment that can relieve symptoms of bipolar disorder, but that also erased many of his memories in the process. He kept saying, "I don't remember," of the conversations we'd had a few weeks prior.
His wife, Kim, patiently reminded him of experiences that tethered him to his life. "In terms of looking for a job, it's very difficult to talk about your accomplishments or the things that you have 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 software sales job six months prior. He worried about paying for day care for their two girls, but wasn't quite ready to look for work. "Right now it's pretty bleak, and I don't have any plans because I'm going through a depression," he said.
Then came the pandemic. Its impact on Emile surprised me.
"With everything that's happening, I'm actually doing really, really well. I'm surprised with how my health is holding up," he now says.
Losing the mad dash of the commute at either end of their days gave back time and sanity. It meant he could sleep longer, and no longer needed to pay for day care. Teletherapy was convenient. Working from home enabled the family to spend more time together. For the first time, I hear Emile laugh.
Kim later tells me all that improved his mental health, and hers. "It forced an entire slowdown of modern life," she explains.
And, she says, the pandemic paled in comparison to the stressors they faced the previous winter. "If there is an advantage to his illness, [it's] that we were just sort of primed to know how to handle our family in crisis."
Copyright 2022 NPR. To see more, visit https://www.npr.org.