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Robert Neubecker

Why I stopped hiding my chronic illness from my colleagues

Every day on my way to lab, I pass a bulletin board tacked with 4-by-6 photos of a petite brunette with twinkling eyes and a broad smile. In one, she’s celebrating her successful qualifying exam. In another, she’s en pointe, arms arched gracefully above her head. It was in this spot just over 2 years ago that I last spoke to Maria, who was standing in the hallway eating her lunch. “Why don’t you go sit down in the break room to eat?” I laughed as I passed by. “If I sit down, I’ll fall asleep,” she answered. I walked on, concerned but telling myself she must have been tired from working long hours, as she always did.

A few weeks later, Maria passed away suddenly from a mysterious autoimmune disease. It was as though the life went out of our department. Maria had been a near-constant, vivid presence, and a bright light of welcome to everyone who entered the building. The hallways felt empty without the echo of her laughter. Her death was especially shocking because I, like many in the department, didn’t even know she’d been sick.

Maria was by all accounts the model student: She had received a prestigious fellowship, was about to publish two high-profile research articles, and was deeply involved in serving the community. It was only after her death that I learned Maria had spent the last weeks of her life searching for answers to unexplained symptoms.

As I weighed her public accomplishments against her private hospitalizations and struggle to find a diagnosis, I felt like a hypocrite. For me, hiding the effects of my connective tissue disorder—my chronic pain, crushing fatigue, and skeletal deformities—was an art form. Summer of 2013, the classes taken during my recovery from major surgery to hide my summer “off.”

Summer of 2016, another major surgery and the pain of sitting through a short course too soon after having my rib cage pieced together like a jigsaw puzzle. Fall of 2016, weeks of 7 a.m. physical therapy scheduled to avoid missing classes. Summer of 2017, sleeping through my flight to a conference. Perhaps worse than any of the physical symptoms was my sense of alienation from my classmates, who seemed to know more about backpacking across the country and pulling all-nighters in the lab than appealing denied health insurance claims or juggling doctor’s appointments. I wondered whether there was a place for me in academic science.

Maria’s sudden death was a wake-up call. … I was only alone to the extent that I stayed silent.

Maria’s sudden death was a wake-up call. I began to reach out to fellow students, disability services, and the diversity office to discuss how to better support trainees with disabilities, chronic illnesses, and mental health conditions. We started a seminar series featuring senior scientists and clinicians with these conditions and held social events for trainees to connect over our shared experiences. Along the way, I met a classmate with a similar condition just down the hallway. As we compared notes on physical therapy techniques and whether our insurance covers compounded medications, I began to regret that I’d wasted 4 years in solitude. I was only alone to the extent that I stayed silent. I’d been so blinded by my fear of being vulnerable that I couldn’t imagine the immense relief I would feel when I finally let go.

I’ve now talked to countless students with a range of conditions and experiences. Ironically, the one feeling we all share is a deep sense of isolation. It can seem a privilege to be able to pass as nondisabled and avoid the potential consequences of disclosure, but it is also a curse when we choose to suffer in silence.

In 4 more years, the graduate students in our department will know Maria only as a name on a plaque. But the community can honor Maria’s legacy by taking steps to ease the burdens of those with chronic illnesses and disabilities. Include us in diversity initiatives. Simplify access to health care and insurance. Promote a climate that prioritizes health above productivity. Foster a sense of community where we feel safe to disclose our conditions. Show us that we belong in science and don’t let us fall through the cracks.

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