For the last 10 months I have been living at home in quarantine. As college professors, my husband and I teach and attend meetings online. Our toddler spends just an hour a day at day care – outdoors, weather permitting. No one in our family sees the inside of a grocery store. When one of us absolutely needs to visit a doctor, we snag the first morning appointment and hold our collective breath for 14 days. And so it was earth-shattering when I checked into a teeming Boston hospital Christmas week, presenting with small-bowel obstructions, as COVID-19 cases hit record highs.

As Maine debates who will get the first COVID-19 vaccines, news coverage has focused on the disproportionate number of coronavirus deaths among residents of nursing homes, but evidence shows that treating Crohn’s disease with steroids also elevates the risk of death from COVID infection. Joe Phelan/Kennebec Journal Buy this Photo

As a fit, white woman in my early 40s, I don’t look especially vulnerable to the virus ravaging older populations and communities of color. But the immune-suppressing medications I have taken for 25 years to keep Crohn’s disease in check have left my body weakened to fight COVID. Without these powerful drugs, my body attacks the naturally occurring bacteria in my gut, producing inflammation that leads to abdominal pain, diarrhea, malabsorption and sometimes bowel obstruction. When the pipes are fully blocked, I have to go to the hospital for scans, scopes, hydration and medical or surgical intervention.

No doctor could tell me why my inflammatory bowel disease decided to flare now, after three years of remission on an infused immunosuppressant. Their focus was reducing the inflammation quickly with IV steroids, which also increased my vulnerability to COVID dramatically. According to the SECURE-IBD database, which tracks COVID-infected patients with IBD in the U.S., currently 7 percent of those patients die of COVID when steroids are their primary IBD treatment. That compares to the 2 percent COVID death rate from my infused immunosuppressant – the vulnerability that has kept my family isolated at home since March 2020.

Meanwhile, Americans with COVID are now dying at a rate of 1.8 percent, according to the Johns Hopkins Coronavirus Resource Center. News coverage has rightfully focused on the outsized proportion among those deaths in people in nursing homes. But where does that leave younger adults with autoimmune disorders who must weaken their bodies’ own defenses against COVID in order to stay alive?

Even though 1.6 million Americans have been diagnosed with IBD, many of us are used to having our disabilities unseen. We are skilled at concealing our discomfort and pain in public, and only those closest to us are attuned to the signs of our struggles, like radical changes in diet. In the COVID pandemic, that invisibility can have life-threatening consequences, as I experienced in my recent hospital stay. Because my doctors wanted to rule out a serious bacterial infection in my gut, I was initially assigned to one of the few private rooms. Once that precaution was removed, the hospital informed me I would be moved to a shared room, despite my heavy immune suppression.

Fearful of what that could mean for me – sleeping feet from another patient, with many more medical staff entering and exiting the space, equipped only with paper surgical masks – I threatened to leave the hospital, and was able to spend another night on my own. The next morning I woke up with unexplained muscle aches throughout my body. My team of doctors ordered a COVID test, ensuring that I would remain isolated until the test came back negative. It was only the universal fear of COVID in hospitals – not my specific diagnosis and vulnerability – that minimized my risk.

As Maine debates who will get the first COVID vaccines, I wait anxiously. How will our state decide whether a steroid-dependent IBD patient quarantining at home will have access to a potentially life-saving vaccine before a healthy grocery store worker who does not have that privilege? For immune-suppressed adults to become a priority, the radical life changes we have endured need to become much more visible in the media. In the absence of a set of images and robust statistics to represent this diverse group, we can share our stories and hope they stimulate recognition. This will become even more crucial as vaccinated Americans begin to feel that the pandemic is behind them, and others must remain out of sight.

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