What The Pandemic Taught Me About Navigating Chronic Illness
If the world can stop, maybe I can too
As long as I can remember, something’s been up with my gut. When I was four, my parents frequented a restaurant called Golden Lotus for its fried rice. I hated that fried rice. So for years, my staple meal was plain steamed rice with salt and pepper. My parents, of course, assumed I was picky. It only took me two decades of being sickened by such seemingly unrelated foods as empanadas, pancakes, chocolate cake, and mayo to discover that I am egg intolerant.
But between Golden Lotus and the egg revelation, there were many other red flags — writhing in a fetal position in hotel rooms, sudden nausea, urgent bathroom trips, bouts of anemia — that signaled that my issues weren’t caused solely by a stealth ingredient.
After years of flirting, my gut and I made it official in 2012, when I was diagnosed with Ulcerative Colitis. Colitis is a debilitating, chronic, autoimmune disease that made me lose trust in my own rogue and inexplicably self-sabotaging body. It fundamentally changed my self-identity. All this may have been less isolating had I experienced more palatable symptoms, but unfortunately, recalling the intricacies of your bowel movements is only a fun party trick at the doctor’s office. So I buried it all deep within myself and suffered on.
Almost as formative as my digestive health was my work ethic. I saw my parents, immigrants from India, put everything on the line to give me the very best education. Although they never pushed me, I imbibed the value of hard work. I went to the kind of high school where fifteen-year-olds worked in nanotechnology labs, and my alma mater, UC Berkeley, was considered a “safety.”
At this safety school, I then studied architecture, a notoriously cutthroat discipline where sleep goes to die, and your latest project defines your identity. After that, I went to graduate school on the east coast, where all this continued at subzero temperatures. By the time I arrived in the working world, I was a human pressure cooker, which had fully internalized that neither my chronic illness nor my mental health had any place in my professional life. No matter what, the show must go on!
It took me embarrassingly long to come to terms with my mind and body being connected. My gut issues and my relentless drive were an explosive match. I was first forced to confront this when a nurse, making notes about my existing conditions, casually muttered, “Oh, you must be a real Type A personality. I see that all the time in digestive patients.” I was taken aback. How dare he assume he knows me, I thought. How brazenly he had unleashed such judgment, without so much as glancing up from his clipboard! The nerve!
Of course, he was right. I’m a textbook Type A. While the connection isn’t exactly that simple, there’s a large body of recent research on the relationship between stress and inflammatory activity in the body, including ulcerative colitis. As this study shows, stress affects the gut by activating a number of pathways, including the brain-gut axis and the nervous system, and setting off a chain reaction that leads to inflammatory bowel disease.
That nurse, bold as he’d been, was the first person to connect my physical health to something mental or emotional. My working habits and stress levels may not have caused my disease, but they certainly weren’t helping it. In turn, my physical symptoms were deeply affecting my mental health — from shame to constant anxiety. Around and around it went, in a sickening, invisible whirlpool raging inside me, from which there was no escape.
After nearly a decade with colitis, and faced with the possibility of having to step up to more aggressive treatment, I took a three-month medical leave from my job. It was the first time I’d had more than a few weeks off school or work since I was in 8th grade. Realizing that I was both incredibly overdue and incredibly fortunate for this opportunity, I immediately made a gym schedule, researched acupuncturists, and planned recipes.
My leave started in the last week of February. About a week later, the San Francisco Bay Area, where I live, went into COVID-19 lockdown.
Most of my plans were scrapped, and, like the rest of the world, I was anxious. But soon, I realized something fascinating was happening. Just as I was slowing down for the first time in the microcosm of my life, the world, macrocosmically, was coming to a grinding halt. Universal deadlines — the kind that were written in stone and you go to jail for forgetting about — were suddenly relaxed. As strict legal procedures were amended, my fiance and I mused about a Zoom wedding.
Suddenly, I questioned my attitude towards my obligations and my health. If taxes could be filed three months later, maybe I could have postponed that presentation. If Coachella could be canceled, maybe I shouldn’t feel so bad turning down brunch. When I started my medical leave, I had to let the battery drain from my corporate laptop and hide it in a closet to keep myself from checking email. It now dawned on me how absurd that was.
This is not to downplay the pandemic's gravity and human impact or make light of the genuine need for such drastic public health measures. Rather, it is to say that I finally internalized that health, both physical and mental, is kind of a big deal. And that people take it seriously. And that maybe it was okay for me to take it seriously too.
But it’s easy to take a macrocosmic, historic event like a global pandemic seriously. Everyone understands, because everyone is affected or, at least, aware. For me, personal health crises were much harder to take seriously because I felt like the world would move on without me. If COVID is like a Super Bowl commercial, colitis felt like a wadded-up flyer discovered in the pocket of an old coat. Sure, I could show it to people, but would anyone care? Much easier to stuff it back in and keep walking.
The lockdown helped me recognize that the microcosm of my life, my colitis is an unattended health crisis that has been clamoring for a shutdown for years. I had largely treated my health as an occasional hobby — a plant drowned in water only when it was on the brink of death, and miraculously kept surviving. The global shutdown felt like permission to put my health first and take the privilege of slowing down my own life. To organize my work around my health, rather than the other way around.
The pandemic also highlighted the many ways in which our world is poorly designed for healing. Watching as convention centers become makeshift hospitals, I realized that sometimes you have to ask the system’s parameters to flex. I’d always prided myself in finding clever workarounds to appease my health, like obsessively scoping out the nearest public restroom, starving myself on road trips, or smuggling my own snacks to eat in the bathroom at a dinner party. It turns out this ever-heightened state of anxiety takes a significant toll, and the cleverer thing is just asking for what I actually need — bathroom proximity, frequent breaks, and ingredient lists.
It’s not like these revelations changed me overnight. I very much am still dealing with colitis, and am far from reaching any sort of work-life-health nirvana. If anything, the lessons are reminders to myself every day. Today, I still find myself battling guilt, shame, and FOMO, but long work nights have gotten rarer, and the no’s said more frequent.
I did feel better during my three months off than I have in years, and went back to work with a more developed infrastructure for taking care of my mental and physical health in the long term. This is something I’d recommend to everyone — regardless of whether or not they’re battling chronic illness. Arguably, it’s even more of an important reminder if there are no pressing health issues, when it’s all too easy to push health into the interstitial spaces of daily life.
Personally, I’ve started bringing my health to work rather than vanquishing it to the dark worry corners of my mind. I’ve started to appreciate the myriad ways my mental and physical health are linked, and am caring for myself more holistically — not just through the usual suspects of yoga and meditation, but by setting boundaries and asking for help. And I’ve accepted that almost anything can wait.
After all, if the world can stop, maybe I can too.
