I Became Sick Nearly a Year Ago, but Because of the Pandemic, My Illness Remains a Mystery

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In April 2020, about a month after the COVID-19 pandemic forced the country into lockdown, I developed symptoms consistent with some type of stomach issue. I completely lost my appetite, and when I could eat, I was met with extreme bloating and discomfort, mostly on the left side. Food made me exhausted, and the mere thought of eating made me nauseous. I would often be in tears due to immense hunger, but any time I attempted to eat, my appetite would vanish. Often, I couldn’t eat more than two or three bites of each meal. By May, I had lost a significant amount of weight.

At this point in the pandemic, my primary care physician was not seeing patients in the office unless it was an emergency. My only option was a video call, but even that service was booked up for many weeks. When I was finally able to be seen, it was very difficult for my doctor to make any type of diagnosis without evaluating me in person. Through the camera, my weight loss wasn’t as evident, it was difficult to show my bloating, and the doctor couldn’t feel around in my stomach. It was much harder to express my pain. She recommended that I go for an upper endoscopy to check for ulcers and celiac disease.

At this point, the hospitals were quite full and still trying to navigate COVID-19 safety protocols. My procedure was scheduled for Aug. 27, which was three months away. In the meantime, I’d have to continue suffering from an undiagnosed illness that was severely impacting my life. When the pain became unbearable, I was put on anti-nausea medication to alleviate some symptoms, which made it possible for me to at least eat more.

When it was finally time for my upper endoscopy, I had to go alone. Although I’m 23 years old, it was my first medical procedure, and I wanted to have my mom there for me. Laying in that room, being hooked up to IVs, and waking up from anesthesia all alone was upsetting. It gave me an incredible amount of sympathy for the mothers who delivered children alone, for those who had undergone more serious procedures alone, and for those who even died alone this year. My small procedure was so minor compared to other people’s experiences during the pandemic, and even that was miserable.

After four months of waiting, followed by an expensive procedure, I was left at a dead end. My upper endoscopy was inconclusive. I scheduled a video call with my primary care doctor to discuss my options, but without an in-person visit, I was left without a diagnosis. She suggested that I work with a nutritionist to complete the low-FODMAP diet in an attempt to get my symptoms under control.

It’s been difficult not to get frustrated, but I remind myself that doctors are focused on helping patients who are far sicker than me.

It’s been almost a year since my symptoms began, and my illness remains a mystery. The COVID-19 pandemic has made it nearly impossible to get the medical care I need. While the low-FODMAP diet has allowed me to gain back some weight and eat more comfortably, I’m still struggling daily with some level of pain, discomfort, and lack of energy. My self-confidence and my perspective of my body has suffered from the rapid fluctuations in my weight. Because my diet is often lacking nutrients, some days it’s hard to find the energy to get out of bed, which has taken a toll on my mental health.

It’s been difficult not to get frustrated, but I remind myself that doctors are focused on helping patients who are far sicker than me, people who are suffering from life-threatening conditions due to COVID-19. For now, my symptoms are being managed, and despite the events of the past year, I feel very lucky to have gotten the care I did.

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