Taryn J. age 26, was a natural homebody before a pandemic struck Washington state, and now staying at home is enforced by law. Jessica Cannon, age 27, commuted to Seattle by train for almost an hour to reach her job as an accountant, until the coronavirus required her to work from home. Jacquie Roumelis, age 53, is a Spanish teacher whose school was the first to close in Washington state and whose colleague contracted the coronavirus.
All three have underlying conditions that make them more vulnerable to negative outcomes with COVID-19.
More than half of all Americans have been diagnosed with a chronic condition.
According to a Health Stories Project survey, 73% of people with chronic illnesses feel their condition makes them more susceptible to the coronavirus, with 90% increasing healthy hygiene habits and a majority avoiding public places. Taryn, Jacquie and Jessica are no exception.
“I am chronically ill with a side of agoraphobia thrown in for flavor. I’m already quite an expert at being quarantined and spending time alone,” Taryn said.
Taryn was diagnosed with a chronic skin disease called hidradenitis suppurativa in 2017. She also has lung damage from both untreated pneumonia and years of smoking before she quit in January 2020. Given these factors, she knows she is considered higher risk if she contracts COVID-19, a disease that can have severe respiratory effects.
Jessica was diagnosed with type 1 diabetes when she was 11 years old. When she has colds, they often last an entire month. She is already at high risk for the seasonal flu. Catching the coronavirus could be detrimental to her health. “Any time you have a bad fever, are dehydrated or feel nauseous, that is really scary. All of those impact blood sugar. A high body temp can make insulin not work as well,” Jessica said.
Jacquie is new to being high risk. She was diagnosed with invasive ductal carcinoma — breast cancer, stage 1 — on Jan. 2, 2020. “My prognosis was very good. The surgery for me was the hardest part. I’m over that hump now and recovered,” Jacquie said. Now she finds herself undergoing radiation five days a week right in the middle of one of the pandemic hot spots.
“My biggest concern right now is being able to complete my treatment and stay well with it,” Jacquie said. “If I come down with it, can I complete my treatment? I have to hold my breath for 20 seconds while they zap me with it, and that won’t be easy if I have a respiratory disease.”
Taryn, Jessica, and Jacquie are not alone. According to a Health Stories Project survey, 73% of people with a chronic illness feel their condition makes them more susceptible to COVID-19. And although 88% of those with underlying conditions are following COVID-19 news daily, the unknowns still loom large.
Related: People Who Are at Higher Risk for Severe Illness (Centers for Disease Control and Prevention)
“The doctors at the hospital and the nurses, they don’t know many of the answers themselves. It’s all so new. The nurse said that they do have a protocol in place for people who get sick. [But] they don’t want people with coronavirus to be in the oncology unit of the hospital,” Jacquie said.
The lack of information about specific conditions and practical advice is frustrating for Taryn. “Every page has a little blurb about how immunocompromised people should just stay inside, which is not super helpful. Like, what if you need groceries and don’t have grocery delivery?” Taryn said.
Jessica’s doctors have issued advice that in-person appointments should be replaced with video screenings when possible, and she’s received emails with broad spectrum recommendations.
“I haven’t specifically talked to my endocrinologist or primary care physician,” Jessica said. “I did shoot them a message to ask about issues. They’ve been slow to respond, so I think they’re already bogged down. A healthy diabetic asking a question isn’t as big of a priority. I understand that.”
Instead, Jessica has focused on her own research and listening to others with type 1 diabetes. “Stay home, avoid [people] and keep blood sugars in range. I’ve been Googling it or reaching out to my diabetic circles and my community to see if they’ve heard anything [else] from their doctors. Their doctors have said there isn’t a lot of guidance.”
Community bonds, particularly in times of a pandemic, have emerged as a key strength for the immunocompromised.
While only 60% of patients have contacted their healthcare provider about the coronavirus, 79% have reached out to people who share their condition to commiserate and discuss the virus.
“[The online communities have] exploded with activity in the last few weeks,” Taryn said. “They have come together to support all of us so quickly. It was people sharing tips and tricks. A lot of things, like selfies or their favorite thing they did this week while they were bored in quarantine.”
In some ways, those with underlying conditions are uniquely positioned to face a public health crisis. “I’d say people who are chronically ill and immunocompromised know how to be a good support system to each other,” Taryn said. “We know what we’re missing day to day.”
Beyond the chronic condition community, support is more mixed, particularly in work environments.
All three women were impacted professionally by COIVD-19. Per Health Stories Project survey findings, 40% of high-risk patients who work have fewer working hours, lost revenue or sales or are being asked to work from home.
Jacquie and Jessica, who are able to work from home, feel their employers understand the breadth of the risks. “Our superintendent made the decision to close, but ultimately it wouldn’t have been a choice,” Jacquie said of the school she teaches at. Her school closed on March 11, two days before Gov. Jay Inslee ordered schools to close statewide.
Employees at Jessica’s public accounting firm have been working from home since early March. “If I was a grocery store worker or a healthcare worker, I’d be really freaked out right now,” Jessica said. “But because I’m privileged and fortunate enough to work in an industry where it’s fine and supported. I’ve been able to keep myself safe.”
Jessica’s environment is not risk free, since her husband works in IT and does still have to commute to Seattle. But he’s been able to secure a reduced in-office schedule and drives to avoid the risks of public transit.
Taryn and her husband are both unable to work from home. Taryn was set to begin work as a nanny before the coronavirus bloomed in Washington, a job now indefinitely on hold. But she’s more concerned about her husband, an essential employee, and the lack of safety protocols in place for his work at a plumbing supply company. “My husband still has to go to work at the warehouse. He does deliveries and driving and has to exchange paperwork and talk to people all the time,” Taryn said.
As of April 1, and after hours of discussion, Taryn’s husband decided to stop going to work out of concern for the health risks. But this introduces an economic risk to their household, and the health risks still aren’t eliminated. Taryn and her husband have a roommate — also higher risk, with asthma — who worked at Sea-Tac International Airport until March 27 and now works as a house cleaner.
There is a social cost to the coronavirus too.
Taryn has faced pressure from friends and family to disregard social distancing. Her brother’s wedding in Las Vegas is still scheduled for later this month, and family members have told her she is overreacting for not attending. “They say I’m one of the healthier ones, and I’m not that sick, so I should still come to the party. It’s weird and frustrating to me,” Taryn said.
She wishes there was greater empathy overall. “I’m freaked out by how little everyone else cares in general,” Taryn said. “The flippant attitude. ‘It’s only old people or immunocompromised people.’ Do you know what you say when you say that? It means we’re disposable.”
Taryn worries the general public isn’t taking the coronavirus seriously enough and that the U.S. won’t be prepared. Jacquie and Jessica are thinking about the long-term ramifications too.
“I worry about the hospitals. I don’t think they have the resources to handle the spike,” Jacquie said. “I’m thinking about the older people. And the people on the front lines. The firefighters and hospital workers — what do we do when they come down with it?”
Jessica is on the board for Camp Leo, a summer camp for children with diabetes. The board already pushed a founder’s dinner from April to November and are discussing if continuing with camp this summer is feasible. “We are also coming at it from the point of view that all these people are high risk. There’s no reason to expose everyone with their immune systems,” Jessica said. “If it’s still bad in the summer, we won’t have a choice but to shut them down.”
As all three women prepare to shelter in place for April, and perhaps even longer, managing their health still takes top priority. Jacquie still makes a daily pilgrimage, Monday through Friday, to receive radiation. She completes treatment on April 9, a milestone just within reach. Jessica continues to carefully monitor her diabetes, adjusting her medication and diet to account for the change in her lifestyle, so she is less susceptible to illness. She’s glad she receives a three-month supply of her medication by mail. Taryn organizes her stockpile of medical supplies and treatments, disinfects her apartment daily and tries to avoid stressors while staying positive.
“If I could just put out a message to be really kind to each other, extra understanding and patient right now. Be nice to each other,” Taryn said. “And stay inside.”
Editor’s Note: #HighRiskCovid19 is an ongoing movement put together by patient advocates across the U.S. including Molly Schreiber, Jennifer Walker, Ray Bouchard, Charis Hill, Dawn Gibson, Jed Finley, and CreakyJoints. You can learn more here.