By MOLLY TAFT and VIRGINIA JEFFRIES
It’s clear that the pandemic is wreaking havoc on Americans’ mental health: a recent study found that adults in the US were reporting symptoms of depression at three times the rate as before the pandemic.
But some Covid patients, especially those who have been sick for months, say that their mental health has deteriorated even more rapidly since they became ill – and that they’re experiencing depression and mental health syndromes unlike anything they’ve experienced before.
And a study published in November that surveyed the records of more than 62,000 patients with Covid-19 found that 1 in 5 patients developed a mental illness within 90 days of falling ill – with anxiety, depression and insomnia being the most common diagnoses. The study also found that patients with previous psychiatric conditions were 65 percent more likely to be diagnosed with coronavirus.
50 symptoms, and then depression
Covid longhauler Róisín Monroe said in a phone interview that she has been suffering with over 50 symptoms since March. After countless doctor visits, tests and medications left her without adequate relief from the nausea, vomiting, body aches, headaches, sore throat, sore eyes, hair loss, skin rashes and fatigue, Monroe, who is 46 and lives in Kent, Ohio, was still able to do her remote customer service job.
But it was her growing number of neurological problems — which range from numbness in her face and limbs to cognitive problems like chronic trouble remembering words — that she said finally forced her to apply for medical leave from work in mid-October. After seven months of isolation and feeling sick with no answers, Monroe added uncertainty about the job she needs to help her husband support their children to her list of worries.
Monroe’s continuing symptoms have led her to identify with “long-haulers,” a group of patients suffering from lasting problems following Covid infection. And now, like many Covid long-haulers ClearHealthCosts has heard from, Monroe is also suffering with a deep depression.
“I get kind of defensive when people bring that up first because I don’t want people thinking depression is causing this,” Monroe said. “It’s the complete opposite. It’s this illness that’s causing depression.”
Monroe said she believes she caught the virus at work, just before her office sent its employees home to work remotely in late March. Although she tested negative in mid-April, she and her primary care doctor now both believe she had had the coronavirus. When her illness didn’t clear up after a few weeks as her doctor expected, he was at a loss as to what was wrong with her.
“He thought originally I had cancer or multiple sclerosis or something,” Monroe said. “We did a multitude of tests, but everything came back normal.”
Signs of inflammation, and an antacid recommendation
Monroe began getting more symptoms and sought help from medical specialists in August. After an endoscopy and colonoscopy, her doctors saw severe inflammation in her throat, esophagus and intestines, but could pinpoint no cause and sent her home with an antacid.
Monroe said it has been difficult to confide in friends and family about her struggles, in part because her illness and prognosis feel too complicated to understand.
“I did talk about it at the beginning. I would tell them that I was getting better,” Monroe said. “Later when I would tell them, I still have body aches and my sore throat is not going away and one thing after another, they just, they stopped calling.”
Being seriously ill is an isolating experience in the best of circumstances, but Monroe said the lack of knowledge about her illness among the medical community and general public has intensified her situation.
“It really does make you very lonely, people not believing you, and trying to be quiet and not put a smile on your face and pretend you’re O.K., when you’re dying inside,” Monroe said. “It’s very depressing.”
“Even doctors, when I’ve been to the E.R., they looked at me like I was crazy, and it’s so unfair, and it’s so not nice.”
Monroe said she is determined to be positive. But after having overwhelming illness for so long, even thinking positive becomes work. She said she has tried two SSRIs since becoming ill: escitalopram (Lexapro), which she said just exacerbated her gastrointestinal issues, and fluoxetine (Prozac), which she said did not seem to help anything. She has since stopped both.
Working to stop antidepressants, and then Covid struck
Debbie Miller also has experience with SSRIs and Covid. Before the pandemic, Miller, who is 29 and lives in upstate New York, was used to running a packed schedule – and she liked it. In January and February, Miller was finishing up her second bachelors’ degree while working two jobs as a tutor and at a local health food store.
Miller said in a phone interview that things had been so good that she had also recently worked with her therapist to ease off her antidepressants, which she had been taking for nearly a decade for depression and PTSD. For the first part of 2020, Miller said, she was “doing really well” after stopping her medication. “I feel my emotions more deeply. I have bigger mood swings. But all in all, I’m doing pretty okay….It was like, six out of seven days [were] good days.”
Then Miller got sick in March, right before the statewide lockdown, with what she thought was a “combination of a cold and the flu”: joint pain, gastrointestinal issues, headaches, and loss of taste and smell. She said she had to keep going to work at the health food store, and continued her tutoring job online while also finishing the last of her classes for her degree.
Symptoms like extreme exhaustion have followed her in the months since. And Miller said that her mental health issues came roaring back after her sickness – and felt different than they had before.
Before her illness, Miller said her depression and other learning difficulties forced her to learn to “be an efficient student” as she juggled a packed schedule. But with Covid, her exhaustion combined with a reinvigorated depression and increased PTSD symptoms throughout the spring and summer.
Sleep and more sleep
After graduating in May following an “exhausting” spring, she said, “I just slept. For weeks. There were two, three weeks at least…you just lose time. Every day I’d write a to-do list of 5 to 10 things, and maybe I’ll get one thing done…I remember canceling an appointment with my therapist, and the next time we talked, I was like, I’m sorry, I think I was getting a little sick. I just sit in bed all day. And she’s like, that sounds like depression. I was like, oh, yeah.”
Her relationship with food and her mental health also changed with her loss of taste. Miller explained that before Covid, food was a key coping mechanism for her. “Whenever I was in a bad place, mentally, I would make a meal. And I eat it and I feel better.”
But after she became sick, Miller said, she lost her appetite – even as her mental health declined.
“I just didn’t want to eat food,” she said. “I remember I made myself my favorite bagel with my favorite cream cheese, with my dad’s blueberry jam, which was my favorite. I remember eating it and not tasting it at all. I’m just sitting there chewing it, and it was just nothing.”
Like many long-haulers, Miller wasn’t able to get tested for Covid-19 in March when her symptoms first appeared – she said she filled out an online form for testing and finally received a test in May, which came back negative. It was only recently that a new doctor suggested that Covid may be responsible for her continuing fatigue and depression.
One of the most common symptoms of Covid in a survey
Researchers are just starting to look at the specific mental health impacts of Covid patients. In a survey of long-haul patients this summer published by the Indiana University of Medicine and SurvivorCorps, a support group for patients experiencing long Covid, anxiety was the ninth most-commonly reported symptom – 746 of the more than 1,500 respondents reported this symptom.
In one CDC study of Covid-19 patients conducted between April and June, previous psychiatric conditions “were associated with more than twofold odds of not returning to the patient’s usual health after adjusting for age, sex, and race/ethnicity,” the study states. The authors concluded: “The finding of an association between chronic psychiatric conditions and delayed return to usual health requires further evaluation.”
And in a first-of-its kind study published in October in the Lancet, researchers reviewed the “neurological and neuropsychiatric” symptoms of more than 150 Covid patients. The study found that “altered mental status” was the second most-common symptom of the patients surveyed, with some patients presenting new diagnoses of psychiatric disorders.
More research is in the works: in August, researchers in Britain launched a large study into the long-term health impacts of Covid-19, including the disease’s effects on patients’ mental health and how to improve it.
WHAT DO THE EXPERTS SAY?
Experts who see Covid patients agree that the psychiatric impacts of the disease can be debilitating, for survivors and nonsufferers alike.
“I think that there’s just been debilitating surges of depression, anxiety, feelings of hopelessness,” Nidhi Khurana, a psychologist in New York, said in a video interview. “And I think this is stemming from a lot of sources, but there’s this also disabling loneliness that people are experiencing.”
For long-haulers, Melissa Corpus, who runs the practice where Khurana works and who joined her for the video interview, recommends seeking out therapy. “If you can manage anxiety and depression, which exacerbates [some] neurological symptoms, then you’re obviously better off,” she said.
And as Miller’s experiences with her appetite show, the symptoms of Covid in particular can also exacerbate existing or hidden mental illness – especially for long-haulers.
“Loss of tastes and loss of smell…[can] cause significant depression,” Corpus said. “Because if you think about…how food is the central part of daily functioning, and also socialization.”
Some experts say that mental health issues could give valuable insight into the way Covid impacts the brain and the rest of the body.
“All depression is neurological,” Dr. Avindra Nath, who works at the National Institutes of Health studying how viruses and infections impact the nervous system, said in a video interview. “The biology of disease with depression – people have shown that [with] major depression, there’s inflammation in the spinal fluid. And [with] patients who have massive inflammation will get depression.”
For long-haulers like Monroe and Miller, new research can’t come fast enough. Monroe said she has been so sick for so long with no end in sight that she has begun to prepare her family for her death. She has been to her lawyer to prepare her will, given her husband her passwords to the family’s accounts and taught her daughter how to pay the household bills.
“When your head is the way it is, and you feel like you’ve just run a marathon, and you have a sinus infection all at the same time, and your heart is pounding and your chest is burning and you go to sleep like that,” Monroe said, “you can’t help but think that you’re not going to wake up. You’re just not gonna wake up.”
What can you do?
Therapists we’ve interviewed have told us that if you notice certain changes in your behavior such as isolating more than usual, not finding pleasure in activities you previously enjoyed, or changes in sleep, that it might be time to talk to a mental health professional.
Patients have told us that joining long-term Covid support and advocacy groups has been invaluable. It has helped them to compare experiences with other patients and to speak to others who get what they’re going through. A couple places to get started:
- The Body Politic Covid slack support group has over 10,000 members as of November 2020. Body Politic started the COVID-19 support group after two members became sick with coronavirus in early March and realized they needed a community of people like themselves.
- The Survivor Corps Facebook group has about 115,000 members as of November 2020 and a website with resources.
- The Covid Long-Haulers discussion group on Facebook is very active, with about 9,500 members as of November 2020.
- The Covid Long-Hauler advocacy project on Facebook, with about 900 members as of November 2020, was founded by Karyn Bishof, a firefighter and paramedic in Florida.
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