For immunocompromised people in WA, return to ‘normal’ threatens mental and physical health
Maia Williams spends much of her day combing through medical records of the dead.
As a government death investigator, her files offer the broad strokes of lives cut short by COVID-19. When the coughing – or other symptoms – began. Which predisposing conditions the person was diagnosed with. If and when they were hospitalized. Which treatment, if any, they received.
“That can be very sad, for obvious reasons,” said Williams, 35, who lives in White Center.
But then she’ll come across a case of someone with an immune deficiency.
Someone like her.
It’s difficult to quiet the thought: “This is maybe what would happen to me if I got sick,” she said. “I’m not looking at the medical records of people with immune deficiencies or chronic inflammatory lung disease who got better … I’m just looking at medical records for people who didn’t.”
As public safety measures against the coronavirus fade into the rearview mirror – Washington’s mask mandate has ended in most locations and, in general, proof of vaccination is no longer required to eat in restaurants or attend crowded events – many people like Williams are receding even further into lives of solitude.
Around age 3 or 4, Williams was diagnosed with a condition called common variable immune deficiency, a grab-bag term for a number of immune problems. Williams, who has worked from home for the past two years, says she’s living proof of the price of returning to pre-pandemic life.
“What I struggle with is keeping despair at bay,” she said. “Just that it feels OK to throw folks who are high risk under the bus so everyone else can go back to normal.”
COVID-19 case counts have plummeted, but close to 1,000 Americans are dying from the coronavirus every day. And research continues to confirm what we know about the virus’s risk to people with compromised immune systems. They’re experiencing significantly more breakthrough infections, and dying at higher rates, than people who are otherwise healthy.
For Williams, contrasting those statistics – ones that decidedly show the pandemic is not over for the most vulnerable – with loosening public safety rules and attitude shifts, is becoming hard to bear. Frustrated, angry, resentful, bitter – these are the words that readily come to mind, she says.
The Seattle Times spoke with several immunocompromised people, and medical professionals who care for them, about how the next phase of the pandemic is influencing their mental well-being. Not everyone agreed on whether the public should continue to bear collective responsibility for individuals’ health. But each shared ways they’re learning to cope and the type of support they need from their communities.
In general, they said, their pandemic experiences weren’t dotted with the same moments of relief most other people felt. The arrival of a vaccine was thrilling for many people, but it meant little to those whose immune systems didn’t respond to it. The fall of case counts after the delta and omicron waves was comforting to most, but each lull in the pandemic has come with looser safety measures, including ones originally designed to protect those at highest risk.
The survivor
Linda Pennell used to own her own business on Bainbridge Island; she loved her work, which included helping older adults move out of their last homes. “It was a really emotional thing,” she said, about getting homes ready to sell before their owners moved to retirement communities. “I’m really good with people, so I was able to help people with that.”
Pennell, 73, now understands the loss of independence and community many of her former clients felt. In 2016, she was diagnosed with cervical cancer, and by 2021, her physicians found a tumor above her lung. She now lives close to her daughter and grandchildren in Monroe, but during the pandemic she hardly saw them. And she was forced to quit the activities she used to enjoy, like visiting the library.
Hair falls out, or turns to wisps, during chemotherapy. But Pennell didn’t worry when her eyelashes and eyebrows disappeared. Instead, she mourned what it felt like to live life. The powerful drugs made her feel weak. She’s also lived with depression for most of her life, a condition that worsened, she said, when she suddenly felt the imminent threat of death from both cancer and COVID-19.
Depression plus isolation is dangerous for someone like her, she says. “I didn’t want to live, for a while there, after my second” chemotherapy treatment, she said. “All those community connections that you had on a day-to-day basis … All that was gone.”
In February, watching public health protections disappear compounded her feelings of anger and anxiety. But by March, she was feeling more hopeful, in part because COVID-19 case counts were dropping, but also because she’d begun receiving better treatment for depression.
“I’m very relieved that we’re on the other side of it,” she said. “That things are beginning to open up and people are getting back to rebuilding their lives.”
The questioner
Dustin Brown opposed Washington’s mask mandate from the outset. Brown, a 41-year-old Pierce County resident and father of five, saw masks as “an outward way to show inner virtue.”
He has post-traumatic stress disorder, and wearing a mask caused him extra stress and anxiety; it’s hard to breathe and he finds it hard to communicate in a way that builds trust, he said. Plus, he said, most people he knows wore cloth masks, which he knows offer only limited protection against COVID-19.
When he was recently diagnosed with hypogammaglobulinemia – a condition that makes it difficult for his body to fight off viruses – it “caused a great deal of reflection,” he said. “Maybe I should rethink my policy on masks,” he said. And he did. Although he almost always goes without a mask, he will wear one when he visits the hospital or clinic, if he’s required to.
He keeps coming back, though, to this conclusion: Asking everyone to mask, on behalf of the small percentage of the population at serious risk of illness or death, “is obsessive, breeds further mental health degradation and causes more harm than good.”
Instead, he said, he would like to see more narrowly tailored public policies and supports for people such as himself, like when grocery stores offered special hours for older adults.
Brown says he knows his opinion differs from many other immunocompromised people. And unlike some others interviewed for this story, he said the recent relaxing of mask mandates has been a “huge boost” to his mental health.
The mental health professionals
Psychiatrist Dr. Jesse Fann’s patients are facing a “double whammy,” he says. No. 1: They have cancer, or are in recovery from cancer treatment. No. 2: Because of their cancer diagnosis, they’re susceptible to the worst effects of COVID-19.
It adds up, said Fann, medical director of psychosocial oncology at Seattle Cancer Care Alliance and professor of psychiatry and behavioral sciences at University of Washington School of Medicine. Many of his patients venture outside their homes only to attend doctor appointments or pick up essentials, like prescriptions and groceries. After months of isolation, they regularly report symptoms of depression and an inability to find meaning in day-to-day life.
Fann and his SCCA mental health colleagues are in a unique position to support folks who are severely immunocompromised: The existence of their team, embedded within a cancer care center, is an acknowledgement of the serious mental and emotional weight that comes with a cancer diagnosis.
Ailey Armstrong, a clinical oncology social worker at SCCA who works with adults undergoing stem cell or bone marrow transplants, uses mindfulness and relaxation techniques, as well as a therapy called “behavioral activation” that helps people re-engage with activities or hobbies they used to enjoy. The concept is also embedded in an app Fann and his colleagues at UW are developing, which acts like an interactive diary and allows patients to schedule activities, receive reminders and log reflections about how they felt after spending time doing what they love.
These types of interventions have become particularly important, Armstrong said, as the pandemic stretches into year three. At the start of the pandemic, she said, several of her patients felt an incredible sense of alarm and panic, but also a feeling that “now everybody understands the situation I’m in, because everybody was locked down.”
“Obviously at this point in the pandemic that is no longer the case,” she said. “And even with omicron still being present in the community, we hear the rest of the world is ready to move on, or my patients hear that, and they just can’t.”
The strong spirit
Leigh Haynie was in “really good health” the first time she got cancer.
Then, it came back, and she was due for more serious treatment including several rounds of chemotherapy and two stem cell transplants. Haynie, 67, went on to develop a condition called graft versus host disease – which is when a donor’s cells attack the body’s cells – and has spent six long years fighting back by taking immunosuppressants.
Finally, in February, good news: She was strong enough to taper off the immunosuppressants, which kept her squarely in one of the most vulnerable categories during two years of the pandemic.
“I just finished,” she said, overjoyed. Then, she realized she hadn’t yet told Fann, who has been her psychiatrist for several years. He has been “amazing,” she added.
Before the pandemic, she hiked, biked and audited university classes to stay physically healthy and keep her mind active. That all went away in the pandemic – a time when her strong spirituality suddenly became even more important.
“When I really felt like, ‘I don’t want to do this anymore,’ I really felt like my job was to advance this soul as much as I possibly could,” she said, referencing her belief in reincarnation.
Now, she’s finally feeling like it’s safe to ease back to her old life.
She went to a Kraken hockey game. She’s finding time to swim and take yoga classes.
“I had to get to a place to just accept that I’m going to have these limitations, and then just, do the best I can.”