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Mental health struggles take toll on people suffering long COVID

While physical effects are widely known, mental health has been overlooked; OHSU Long COVID-19 Program unique in offering counseling and peer support
Amy Weishan, 48, of Canby, Oregon, talks in the living room of her home.
Amy Weishan, 48, of Canby, Oregon, discusses her mental health challenges while living with long COVID-19. (OHSU/Christine Torres Hicks)

Content warning: In support of trauma-informed communications, please be aware that this message contains topics that may be activating for survivors of attempted suicide and those who have been impacted by suicide or attempted suicide. OHSU Suicide Prevention resources are available and the National Suicide Prevention Helpline can be reached 24/7 by calling 800-273-8255.

 

For Amy Weishan, long COVID-19 is much more than the brain fog and severe fatigue that make simple tasks seem unsurmountable. It’s also a constant emotional roller coaster ride that led her to see a mental health professional for the first time.

“If you saw me right now, you would not believe my story,” said Weishan, 48, and of Canby. “I don’t look like someone who struggles every day. I don’t have a Band-Aid. My struggle is on the inside, and the daily internal fight is really challenging. I’m always one situation away from crying and crumbling.”

Mental health and emotional well-being are often-overlooked aspects of long COVID-19, which causes between 10 and 30% of those who get COVID-19 to continue experiencing myriad debilitating symptoms three months or more after their initial infection. An onslaught of physical conditions can take a toll, leading to anxiety, depression, panic attacks and other mood disorders.

“Those who have a more serious or complex case of long COVID-19 may experience a profound sense of helplessness,” said Jordan Anderson, D.O., an assistant professor of psychiatry and neurology in the Oregon Health & Science University School of Medicine.

Depression and anxiety are how the brain responds to limitations brought on by a new health condition. The longer someone experiences a health challenge, the more a person’s mental health can decline,” Anderson said. “Some long COVID-19 patients haven’t been well since 2020, and are struggling emotionally as well as physically.”

The federal government estimates between 7.7 and 23 million Americans have long COVID. Mental health is among many issues mentioned in President Joe Biden’s April 5 memorandum, which orders the federal government to coordinate the United States’ response to the condition. And yet Anderson doesn’t know another psychiatrist who dedicates most of their time to caring for patients with chronic COVID, the way he does as part of the OHSU Long COVID-19 Program.

Emotional challenges

Weishan and her family fell ill with COVID in July 2020, before vaccines were available and before research indicated vaccination reduces the risk of getting long COVID. She had a hard time breathing, experienced intense joint pain, and was so weak that it felt like she had just run a marathon without training beforehand. While her family recovered, Weishan still had some lingering issues. In October 2020, she tested positive again and experienced a new round of awful symptoms: coughing, pounding headaches, and fevers.

The back-to-back bouts with COVID-19 led Weishan to seek refuge in her bedroom, alone. She craved rest and quiet, and became easily exhausted around others — including her own family. Continued brain fog meant she had trouble gathering her own thoughts, let alone explaining them to others. While she used to be easy-going and gregarious, Weishan became bothered by clutter and preferred solitude over company. She had to take a six-month leave of absence from work.

Once, she forced herself to leave the house on a simple errand: going to a gas station to fill the family car. When the tank was topped off and it was time to leave, she couldn’t restart the car and instantly became overwhelmed.

“I was sobbing, and had to call my husband,” Weishan said. “He came to the station and discovered I had forgotten to put the car in park. He followed me home to make sure I was OK. After that, all I could do was go to bed and sleep.”

It almost became too much in November 2021, when she attempted suicide.

“I remember thinking this a shitty thing to do, but it’s better than what I feel now,” Weishan recalled. “But I didn’t feel anything. So I pushed harder until I broke the surface of my skin.”

She stopped before causing serious harm, and went to her husband for help.

Empathetic listening makes a difference

Weishan heard about the OHSU Long COVID-19 Program through an online support group. Her first appointment was in April 2021; she was later referred to a mental health professional.

“I wasn’t able to get effective help until I met Dr. Anderson at OHSU,” she said. “It felt as though my entire body and mind had turned on me, and I didn’t recognize myself anymore. He helped me make sense of what was happening.”

As a neuropsychiatrist who specializes in examining the ties between mental health issues and the brain as a physical organ, Anderson explained from a biological standpoint what was going on in her body and brain, and how they were connected. Weishan was prescribed medication to help dampen her intense bouts of anger and other moods.

To date, Anderson has treated roughly 50 of the approximately 800 patients who have received care through the OHSU Long COVID-19 Program. Patients who are significantly distressed by depression, anxiety or panic attacks, or who have suicidal thoughts, are referred to him. Most of his long COVID patients are struggling with mental health for the first time in their lives. And for those who have had mental health issues before, long COVID can make them worse.

“Having long COVID itself is a new form of trauma that’s prolonged, and hasn’t stopped for two-plus years for some patients,” Anderson said, adding that many patients struggle to adjust to their new, lower level of functioning as their body slowly fights off long COVID.

Like Weishan, some people need to take a leave of absence from work when they’re initially struck with long COVID. However, most of Anderson’s patients have been able to return to at least part-time work after about a year of gradual recovery.

Anderson focuses on each patient’s symptoms, and recognizes that some could be caused by a physical ailment instead of a mental one. For example, some long COVID patients also experience Postural Orthostatic Tachycardia Syndrome, or POTS, a blood circulatory disorder that can cause something similar to a panic attack. In those cases, he and other OHSU long COVID providers recommend simple steps such as emphasizing hydration and consuming sufficient nutrients and electrolytes, in lieu of prescribing panic attack medications.

When appropriate, Anderson prescribes some common psychiatric medications, including propananol or benzodiazepine for anxiety. But perhaps the biggest help he offers is being an empathetic listener who truly hears what his patients share.

“Mental health issues worsen when patients feel invalidated,” he explains. “Their suffering can be reduced when their loved ones and health care providers are more supportive and make a sincere effort to understand what they’re experiencing.”

To further support long COVID patients with mental health concerns, the OHSU program has organized support groups. Up to 20 patients have met virtually about once a month to share their experiences with each other. Weishan participated in two such groups, and found hearing others’ stories helped her understand that she’s not alone.

Anderson says health providers of all specialties should be familiar with long COVID and be open to referring patients with more complex cases to a specialized clinic if needed. He also encourages providers to screen patients not only for physical symptoms, but also for their mental health.

A different kind of joy

Many things have changed in the nearly two years since Weishan first fell ill with COVID-19. She still gets headaches, her sense of smell is often off, and she’s separated from her husband. She’s grieving over how long COVID-19 has changed her world.

But not all is lost. For the past year, Weishan has found confidence while diving into a new job. She primarily works from home, where she can better control her daily cadence. She feels good about her job, which helps health care institutions receive insurance coverage for prescription medications, and taps into her analytical and critical thinking skills.

“Finding my happy looks very different these days,” she said. “I don’t know what the future looks like, but I’m purposeful in what I do and go after more wins each day. I keep trying, and put one foot in front of the other. Some days are easier than others.”

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