Chronic Illness
10 Ways the Pandemic Parallels “Normal” Chronic Illness Life
For young people with chronic illnesses, pandemic restrictions are not so new.
Posted January 26, 2021 Reviewed by Devon Frye
It was early March of 2020. Per usual, I received many critical looks as I vigorously wiped down my seat, armrest, and tray-table immediately after boarding the plane. Living with severe food allergies, this cleansing has always been part of my life.
I’m well-versed in supportive self-talk along the lines of, it doesn’t matter if these strangers think you are neurotic—keep yourself safe. But just one week later, on my return flight, the judgmental looks were absent. I was completely camouflaged among my fellow passengers; they, too, were frantically disinfecting their surroundings. When I returned home, I quickly realized that the wipes I rely on daily were suddenly the hottest commodity. As the pandemic has progressed, I’ve realized the many ways it mirrors “normal” life for young people with chronic illnesses.
1. Infatuation with sanitation.
“Don’t touch your face” was old news to many young people with medical conditions. For some, treatment with immunosuppressant medications leads to a fear of germs and wariness of coughing and sneezing of any kind. For others, possible exposure to allergens leads to cleaning every surface “just in case.” As the empty shelves of cleaning supplies have shown, such vigilance is a new reality for millions.
2. Stockpiling supplies.
The start of the pandemic propelled many to accumulate food, household essentials, and healthcare products. For young people with chronic illnesses, practically keeping a pharmacy at home is just a fact of life. A mask and hand sanitizer simply became two more things—along with medical supplies, snacks, and backup medical supplies and snacks—to add to the bag when stepping outside of the house.
3. Eternal uncertainty.
One of the greatest struggles of the pandemic has been not knowing when it will end and perhaps feeling that it will never end. For those with chronic illnesses, though, lack of control and predictability are nothing new. With autoimmune diseases, it is often impossible to predict when a flare will occur and how long it will last, making it difficult to plan for the next five hours or the next five years.
4. Kitchen confidence
Restaurant closures left many to spend more time in the kitchen than ever before, mourning the loss of eating establishments and trying their hand at cooking, perhaps for the first time. For anyone with dietary restrictions, though, cooking from scratch is often the only option. Furthermore, in talking to teenagers with food allergies, it appears that the sudden absence of social gatherings involving food has led many to breathe a sigh of relief.
5. Social anxiety.
Different definitions of “safe” pandemic behaviors have wreaked havoc on several friendships. Young people, who are especially concerned with fitting in, may fear that they will be seen as lame, weak, or boring should they adhere to CDC guidelines and not party with their peers. These feelings are familiar to many with medical conditions, who must often change or cancel plans when not feeling well and subsequently worry that they will be seen as “no fun.”
6. Dating difficulties.
Dating during the pandemic may lack spontaneity and involve an uncomfortable element of interrogation. Where have you been? Who have you been with? For those with medical conditions, though, this is the default. Individuals with inflammatory bowel disease must know the location of every bathroom. Individuals with organ transplants must take their medications at precisely defined intervals. And individuals with severe food allergies must know everything their partner consumed within the last several hours—“just a kiss” could easily escalate into anaphylaxis.
7. Love and loneliness.
Lack of in-person social interaction has led to collective feelings of loneliness. At the same time, this lack of larger connections has, for many, led to a greater appreciation for a close circle of trusted friends and family members. Young people with medical conditions often experience loneliness due to hospitalizations, missed school for medical appointments, activity restrictions, or just feeling different. At the same time, they learn who truly cares.
8. Aches, pains, and problems with zzz's.
Hours upon hours of sitting and staring at screens, coupled with the stress of the pandemic, has resulted in perpetual aches, pains, tension, and stiffness—symptoms near and dear to young people with chronic illnesses. Relatedly, chronic illness and sleep difficulties frequently co-occur, paralleling the now widespread “coronasomnia.”
9. Bleak burnout.
Some young people are “just done” with the pandemic and hence disregard social distancing and masking guidelines. Likewise, young people with chronic illnesses often describe being “sick and tired of being sick and tired,” which sometimes results in medical non-adherence. Things seem so bleak, that people believe their behavior won’t matter—but it does!
10. Longing to return to “normal.”
Early in the pandemic, the term “new normal” became ubiquitous. Now, society is begging to “return to normal,” as many yearn to just rewind to February of 2020. Both of these feelings are common among individuals with chronic illnesses. In fact, “new normal” is a term used by patients and parents to describe adjustment to a new diagnosis. Just as time is now thought of as pre- and post-COVID-19 onset, time for individuals with medical conditions is often thought of as pre- and post-diagnosis. Just as the world is experiencing a collective grief, young people with chronic illnesses commonly experience a mourning for their former bodies.
So what’s the upside of all this? Rather than being at-risk for poor pandemic prognoses, maybe young people with chronic illnesses will demonstrate resilience, having much practice behind their belts. Maybe the gap between those with and without chronic illnesses will narrow as everyone gets a sense of what restriction is like. Maybe we will all emerge with patience, empathy, and compassion.
