At 22, I moved into a 500-square-foot apartment in Manhattan with two roommates—enamored by the possibilities ahead. It felt like a storybook start to my writing career—until a medical crisis derailed my plans along the way.
Just two weeks before my 24th birthday, I was feverish and bedridden—assuming my flu-like symptoms would soon pass. Days later, I found myself in a Burn ICU—sedated and on a ventilator, as doctors worked to stabilize my condition. I was diagnosed with Stevens-Johnson Syndrome, a rare and life-threatening reaction to medication.
While I hadn't experienced burns in the traditional sense, the condition caused chemical-like burns. Over more than 60 percent of my skin and led to severe damage to my eyes, throat, and genitals. I remained hospitalized for 26 days.
My eyes—which suffered the worst damage—had deep corneal scratches that left me in total darkness for the first few months. The meibomian glands—which produce tears to lubricate the eyes—also became permanently scarred.
The visiting ophthalmologist warned that my vision might never fully recover.
Amid the chaos of my hospitalization, one thing became abundantly clear—I wasn't alone. News of my critical condition quickly spread from my friends, to their families, to childhood friends, to coworkers, to strangers. Hundreds of people reached out to me and my mom—a single parent—with words of encouragement, whether through a text message or a heartfelt card sent via snail mail. While I was sedated, my best friends, who had already spent hours by my side in the hospital, organized a GoFundMe to help cover my medical expenses.
It was difficult to come to terms with how much help I needed, but this fund ultimately saved me from financial ruin. My month-long ICU stay had accumulated over $800,000 in medical bills.
Although my health insurance paid for the majority of the expenses, I was still left with significant costs—Uber rides to and from daily doctor's appointments, at-home nursing care, prescription eye drops, and custom medical devices that ultimately saved my eyesight—all of which weren't covered.
As I started to come to terms with my illness, I began to view my life as two distinct chapters—much like anyone grieving a loss. There were my life events before SJS—when my health was an afterthought—and the ones after SJS—when every aspect of my body and daily routine demanded vigilance.
Living in Manhattan—which was once the dream—quickly became unsustainable, and moving back home helped me quickly recoup in a much slower pace of life.
Beyond the months of physical rehabilitation, I greatly underestimated how challenging the transition from the acute phase of my illness to managing a chronic, less visible condition would be—a struggle that extends far beyond the physical scars. For instance, when my vision returned a few months later, many assumed I had fully recovered. In reality, I was battling chronic fatigue, a dwindling social battery, and escalating medical anxiety.
My eye condition continued to deteriorate in other ways, compounding the challenges I already faced. The steroid drops essential for healing my damaged corneas caused dangerously high eye pressure—increasing my risk of glaucoma and potential permanent blindness. Despite appearing to resume a normal life, I found myself visiting my glaucoma specialist more and more frequently—ultimately undergoing surgery earlier this year to lower the elevated pressure.
Each visit to the clinic is a stark reminder of how much my life has changed. Sitting in the waiting room for dozens of ophthalmology appointments every year, I am always the youngest patient by at least a few decades. Even now, I depend on steroid drops to manage severe eye inflammation, carefully balanced with glaucoma drops, many of which aren't covered by insurance—to maintain safe pressure levels and protect my vision.
I quickly learned how exhausting it is to constantly have your health on the brink of being compromised—and there are many things I once took for granted in my previous life that I now find myself mourning. Post-SJS, I sit under a wide umbrella at the beach—slathered in SPF 50 sunscreen—watching my friends wade into the water. I'm no longer able to spend hours in the sun or swim freely as my skin is far too fragile—and my delicate eye condition means I can never submerge my head underwater.
These are moments when I feel a deep disconnect from my able-bodied peers—as many interactions are overshadowed by physical pain, the lingering trauma of my ICU experience, or grieving the carefree version of myself I once knew. The limitations of chronic illness are hard to grapple with—but I've found comfort in the support of my partner and closest friendships. I've also connected with others through a Facebook group for SJS survivors—a community of nearly 4,000 people who either live with the condition or know someone affected by it.
While many see their twenties as the best years of life, my journey has taken a much different path—and I've learned to make peace with that. Living with a rare disease was an unforgiving life lesson I faced early on—but it has taught me to be more empathetic, more present, and more aware of life's fragility. I'm proud of the milestones I've achieved—including celebrating one full year of sobriety this month—a reflection of my newfound mental clarity and commitment to a healthier lifestyle moving forward.
Stella Shon is a freelance writer and editor who covers travel, lifestyle, and personal finance topics.
All views expressed are the author's own.
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