I never thought I’d be unique in such an awful way. I never expected I’d baffle so many doctors. I had read about other people’s medical mysteries, but becoming one was definitely not on my existential bingo card. I had no idea my life would get so WEIRD.
Throughout my life, I had always enjoyed excellent health. I put a lot of thought and effort into it. I went for physicals and had my annual mammogram. I kept up with pap smears, colonoscopies, and routine bloodwork. I also stayed current with vaccines, eye exams, skin cancer screenings, and regular dental cleanings. If there was something on my wellness to-do list, I was on board. I ate tons of vegetables and fruit, avoided processed food, consumed the recommended amount of fiber. I maintained a healthy weight and did regular cardio and strength training. I wore sunscreen and had a regular sleep schedule. I focused on good social relationships. My doctors praised my diligence and I felt really secure wearing my invisible crown of good health.
But then, things started getting weird in May 2023. Almost overnight, I developed an all over body rash that looked like a mix of hives, heat rash and eczema. Then my entire mouth exploded in painful, fluid-filled blisters and canker sores. The skin rash got better over the span of several months, but the mouth ulcers just got worse and worse. By early June, I struggled to eat and was in excruciating pain. As time went on, the mucosal blistering progressed beyond my mouth to other parts of my body. By early 2024, my life was pretty unlivable. I considered suicide almost daily.
Getting to the bottom of my medical mystery initially started with my primary care doctor. I saw him within weeks of my initial symptoms. When he had no answers, my situation rapidly snowballed into referrals to specialists – a rheumatologist, four different dermatologists, a dentist, an ENT, an ob-gyn, a gastroenterologist, and a general surgeon. Many of these appointments had long waits to even get in the door. Often, the specialist couldn’t escape the tunnel-vision pull of their specialty. They failed to see me as a whole patient with an array of different, but related, issues. I repeatedly heard ‘we’re not sure what to do with you’ and ‘I’ve never seen a case present like this.’ I was solidly in weird territory, where everything feels scary and hopeless.
After seeing 11 different local doctors over 27 different appointments, I still had no answers. I went through close to 100 blood labs, swab cultures, and several biopsies. I received one incorrect diagnosis after another. All seven medications that doctors threw at my condition failed to fully resolve my symptoms – some helped a little, some did nothing at all.
Finally, I landed at UNC Chapel Hill Medical Center. There, I came under the care of a specialist who looked at the whole picture. On the very first visit she told me, ‘You’re in the right place – we’ll figure this out.’
How Weird 