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If the world can pause, maybe I can too

Lessons I learned while treating chronic illness during the pandemic

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Photo by Jon Tyson on Unsplash
Photo by Jon Tyson on Unsplash

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 being picky, and it took me two decades of avoiding such seemingly unrelated foods as empanadas, pancakes, chocolate cake and mayo — to discover that I am in fact egg intolerant. 

But between Golden Lotus and the egg revelation, there were many other red flags — writhing in fetal position in hotel rooms, sudden nausea, urgent bathroom trips, bouts of anemia — that signalled 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.  This is a debilitating, chronic, autoimmune disease that made me lose trust in my own body (how hard is it to not attack yourself?) and fundamentally changed my self-identity. It may have been less isolating if the symptoms were more palatable, but detailing the intricacies of your bowel movements is not exactly a party trick anywhere outside a doctor’s office. So I largely kept it to 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 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, only in subzero temperatures. By the time I arrived in the working world, I’d fully internalized that my chronic illness had no place in my professional life, and that no matter what, the show must go on.

Though seemingly unrelated, my gut issues and my relentless drive were explosive in combination. 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 think he knows me, I thought. How brazenly he had unleashed such judgement, 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 have been a number of studies on the relationship between stress and inflammatory activity in the body, including colitis. My working habits may not have caused my disease, but they certainly weren’t helping it. 

So 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 of 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 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’d go to jail for forgetting about — were suddenly relaxed.  Strict legal procedures were altered, and my fiance and I mused about getting married on Zoom. 

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 cancelled, maybe I shouldn’t feel so guilty 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 ridiculous that was.

This is not to downplay the gravity and human impact of the pandemic, or make light of the very real need for such drastic measures for public health. Rather, it is to say that I finally internalized that health 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 Superbowl commercial, my 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 calling for a lockdown for years. I had largely treated my health as a hobby —  a plant that was 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 the unwell. Watching as convention centers become makeshift hospitals, I realized that sometimes you have to ask the system’s parameters to flex and change. I’d always  prided myself in finding clever workarounds to appease my health, like obsessively scoping out the nearest public restroom, starving myself on roadtrips, or smuggling my own snacks to eat in the bathroom at a dinner party. It turns out the cleverer thing is 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. I did, however, 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 myself in the long term. I still find myself battling guilt, shame, and FOMO, but long work nights have gotten rarer and the no’s said more frequent. And I’ve accepted that almost anything can wait. After all, if the world can stop, maybe I can too. 

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