Chronic Illness Prepared Them For The Pandemic. What Happens When It’s Over?

The strawberries. The strawberries are an issue, Julie Blackburn thought.

It was March 2020, and a plethora of household staples had already become hard to find as COVID-19 took hold across the U.S. Gone were Clorox wipes and toilet paper. Even yeast and oat milk were hard to come by. But Blackburn’s most consuming concern at that moment was how to get her hands on the only “health food” her three-year-old son would eat willingly: fresh strawberries. 

Blackburn, who lives in Rhode Island with her partner and two children, both under the age of four, couldn’t simply drive to the store to hunt them down — and she still can’t. Going out during the pandemic comes with some risks for everybody, but for Blackburn, who is immunocompromised, it’s especially fraught. The data scientist has Primary Progressive Multiple Sclerosis (PPMS), a condition that affects the central nervous system. “My own immune system is attacking my nerve endings,” Blackburn explains. The medication she takes to treat PPMS, called Ocrevus, decimates her B cells, the primary builders of antibodies in the immune system. “If I get a cold, it’s going to take a lot longer to recover. If I got COVID?” she asks. “I don’t want to find out.” 

So, during those first scary and confusing weeks of the pandemic, Blackburn shopped online. She tried various methods and delivery times to make sure her son could get his strawberries — if possible, fresh ones — which took extra energy. Everything did those days, though. As weeks turned into months, she made tough decisions about whether it was safe to send her oldest child to preschool, weighing the risks of sending him to in-person class (where he could get sick, or pick up the virus and pass it on to her) with those of pulling him out (which could have caused him to lose his spot in the class at his preferred time for good, and would mean juggling childcare with her job). She ultimately chose the former. “My son was officially diagnosed with autism in October, so we are confident that in-person learning was the right choice for him,” Blackburn says.  

That decision, like so many others she’s had to make — including just leaving her home — was a calculated risk. Blackburn says she makes as few of them as possible. And when she does make them, she takes extra precautions: When she goes out, she steers well clear of any people who aren’t wearing face masks. “When you have a chronic illness, you have to be your own advocate,” she says. “If everybody else is staying six feet apart, you know you better make it 12 feet. If everybody else is going out less frequently, you better just stay home.” 

Doctors said early on that many immunocompromised people are at a higher risk of getting severely ill from COVID-19. So while everyone was told to stay at home as much as possible during the pandemic, those recommendations were especially critical for some people with conditions that weakened their immune systems. As more data became available, some folks were told they were definitely at increased risk — those with conditions such as cancer or chronic kidney disease. Others found themselves in a more limbo-like classification — the Centers For Disease Control and Prevention said people in an immunocompromised state due to immune-weakening medicines or immune deficiencies could be "more likely to get severely ill from COVID-19." Not knowing for sure was just as tough for those in the indefinite category, and many of them tried to be extra safe out of an abundance of caution.

Still, some immunocompromised and chronically ill people found that the stay-at-home orders didn’t change their day-to-day lives all that much. Many had already been avoiding venturing out in public, either to minimize their chances of catching colds or the flu, or because of symptoms like fatigue or pain that limited their mobility. “Lockdown was so similar to real life for me,” says Sarah Ramey, a musician and author who has several chronic conditions that affect her immunity and cause pain and fatigue, including complex regional pain syndrome (CRPS) and chronic fatigue syndrome (ME/CFS). “Pre-pandemic, I was already working from home, already pretty isolated because of how limited my energy is due to my illness. So my routine is not different. If anything, I went from 90% isolated to 99%.” 

Emily J. Shapiro was 22 about 25 years ago when she developed Crohn’s disease, an autoimmune disease of the gastrointestinal tract that causes the immune system to attack healthy tissue in the body. She agrees there are parts of her life that the pandemic didn't change much. “I was already using my elbow to hit the elevator button and using hand sanitizer mindfully before all this,” she says. But on the whole, her day-to-day has shifted drastically. Until this spring, Shapiro was working in the emergency room at Greenwich Hospital. But COVID-19 forced her to leave the job after 21 years of service. “I didn’t know how my immune system would respond — if at all — to COVID,” she says. “Crohn’s is an autoimmune disease, my system is already compromised.” The decision to leave was a tough one — she’d initially been a patient in the hospital in her early 20s and went on to get a job she loved as an employee there.

But this spring, due to the pandemic, she found herself no longer tied to her place of work. She and her partner decided to move from New York City to Vermont to start over.

Blackburn, too, found the past year very disruptive. Already, tasks that many people may not think about — taking a shower, blowdrying their hair — can take extra work for those who are chronically ill. The additional stress and uncertainty caused by the pandemic made everything that much more difficult. So even looking everywhere imaginable online for a way to have strawberries delivered to her door took more out of her than it would have pre-COVID-19. 

To illustrate her point, Blackburn references “The Spoon Theory,” a term coined by Christine Miserandino, a writer and advocate for people with chronic illness. The idea is that you start out each day with a finite number of spoons, representing energy reserves. Each task you do uses up one spoon, maybe more, and when you run out of spoons, you’re done — so you have to be choosy about what you do during a day. Is taking a shower and blowdrying your hair worth the three spoons it’ll take up, or should you save those for making dinner for your kids? Blackburn says the stress of the pandemic has made some activities take more spoons than normal. She even created an app to help herself and others with chronic illness keep track of their "spoons." “In many ways, we all have fewer spoons to give now,” she adds.

As Blackburn makes clear, avoiding COVID-19 has been just half of the battle for immunocompromised people lately. Chronic pandemic-prompted stress — something many of us have experienced during the past year — can take a dangerous toll on their health as well. “People with longer periods of chronic stress are more likely to get ill,” explains Martin Hagger, PhD, a professor of health psychology at the University of California, Merced. “They’re more likely to be vulnerable to illness and pathogens, so in the case of people who are already immunocompromised, the increased stress may exacerbate their vulnerability. It is troublesome.”

So, while the need for “self-care” became more important for everyone last year, it’s been especially essential for people with compromised immune systems.

Shapiro has turned to some of the same spiritually, emotionally, and physically nourishing practices she relied on when was diagnosed with Crohn’s. “When I was in college, I got sick and I was so upset; I couldn’t understand why this was happening to me,” Shapiro reflects. “And I can see myself out on my patio with markers and my drawing pad. I used the art as a mechanism to ask my colon — What are you trying to tell me? What am I supposed to learn from this? What is my digestive system trying to tell me? I drew my intestines, large and small, trying to get in touch with a part of my body that was unwell… It was my mom’s idea.” 

Shapiro ended up coming up dry for answers that day. But she found other wellness practices along the way that did make her feel better: the emotional freedom technique (sometimes called tapping), humming, breathwork, meditation, reiki, and yoga, methods she’s continued to lean on amid the stress of the past year. She’s also shared them with friends and family struggling with the pandemic, people who had no prior experience with being homebound. She even took her side business, Living Beyond Wellness, full-time, and began doing virtual reiki, breathwork, and coaching sessions, with a special emphasis on helping others who are struggling with chronic illness.

Ramey, too, has used self-care to cope with her chronic illness, and has noticed more people doing the same during the pandemic. "We're all turning to wellness, and it reminds me of what happens to people when they get really sick and they have this big pause in their life,” she says. “They’re slowing to a stop and they might start doing yoga for the first time. They just want to feel better, and have the space in their life to lean on wellness in order to find relief."

This ability to use their own experiences to help others has been an unexpected and uplifting element of a difficult year, both Ramey and Shapiro agree.

Ramey adds that now, more people understand what her life has been like since she was in her early 20s struggling with an initially undiagnosed, invisible condition that left her miserable, afraid, and lonely. 

“For the first time, I feel like people understand the way we’ve been living for years, and are coming to [people with chronic illnesses] with empathy,” she says. And although she has been more physically isolated due to COVID-19, she has felt less so emotionally. She got to go to birthday parties on Zoom that she might have had to miss, had they been held in person. She's even reconnected with her bandmates from college virtually over the past year. 

While Ramey is excited to receive her COVID-19 vaccine and is happy that they’re being distributed more widely, in some ways the thought of returning to the “new normal” post-vaccination life is bittersweet. She says that while most people will get to go back out into the world, her life will continue to be mostly the same — but a sense of loneliness may return. “Because of my illness, I’ll just go back to being isolated 90% of the time,” she says. 

And when that happens, she hopes people won’t forget those who will continue to mostly stay home — and who will constantly be counting spoons. “When everyone's allowed to go back to their lives,” she says, “I hope they’ll take extra care to support the friends who can’t come back with them.”