How my health journey went from puzzle to purpose
It took over 100 doctors, 300 tests, and countless dismissals to be diagnosed
For decades, my body was a puzzle that baffled even the most experienced doctors. A symphony of pain, fatigue, and other strange symptoms left specialists stumped. It took relentless self-advocacy, unwavering resilience, persistent determination, and countless hours of research to finally be diagnosed with Sjögren’s disease and Mikulicz’s disease (an IgG4-related disease), and to begin to understand the lifelong health battle that had been raging within me.
For me, the puzzle began in infancy, though doctors wouldn’t see it for years. Recurrent ear, nose, and throat (ENT) infections, relentless whole-body dryness, and a pervasive pain and fatigue that I couldn’t articulate as a child plagued my early years. Breathing difficulties, choking spells, a constant clumsiness — these were part of my childhood “normal” and stretched into adulthood.
The shadows of depression and anxiety lengthened, and autonomic dysfunction took root, blossoming into prominence in my teens and continuing into my 20s and 30s.
When I was 16, the breathing issues became so severe that I missed six months of school. After eight long months, I was diagnosed with chronic bronchitis/bronchial asthma — a label that felt incomplete. It was a piece of the puzzle, but not the whole picture.
Between the ages of 22 and 28, a new torment emerged: unrelenting nausea, vomiting, pain, and bloating. For six years, I was trapped in a cycle of trips to the emergency room and endless tests, all yielding nothing. Finally, desperate and in tears, I sought help from a general surgeon. A standing barium swallow test and a subsequent laparoscopic procedure revealed my gallbladder and the tail of my pancreas had lost function and required immediate removal. While this surgery brought some relief, my neck and spine issues began to intensify, leaving me still battling debilitating pain.
Then, in late 2021, a seemingly minor facial injury on a cruise ship triggered a three-month ENT infection, quickly followed by a debilitating bout of COVID-19. In March 2022, I woke up with my eyes swollen shut, marking the beginning of a terrifying downward spiral. Multiple disease progressions surged, yet we still had no name for what was happening.
I saw more than a hundred doctors, endured 300 tests, and was met with countless dismissals. I was branded “crazy” and gaslit by the medical community.
I reached a crossroads: either surrender to the unknown or fight with every ounce of strength I possessed. I chose to fight. I embarked on an insane journey to prove my conditions, knowing that standard tests wouldn’t suffice.
My body wasn’t lying
I dove deep into medical research, and thankfully, I found my conditions and the specific, rare tests and biopsies that could provide answers. Finding doctors and surgeons willing to order these tests and perform the biopsies was no easy feat. Stating to my surgeons what to look for in the biopsies, and them noting it to the pathologists, was key to identifying my rare and autoimmune conditions.
After three decades, I was finally proven right. The tests and pathologies confirmed what I had long suspected. While I felt immense joy and relief at finally having names for my suffering, I was also filled with righteous anger at a healthcare system that had dismissed and gaslit me for so long.
Driven by a desperate need for answers, I immersed myself in medical research, devouring every study and article I could find. This relentless pursuit led me to online support groups, virtual spaces where I connected with people from around the globe.
Through countless conversations, I discovered a profound truth: Despite the unique twists and turns of each journey, we share a common thread of misdiagnosis, dismissal, and a relentless search for validation. It was in those online communities, surrounded by the shared experiences of others, that I realized I wasn’t just fighting for my own health, but for a community still searching for answers — and that ignited a fire in me to advocate for myself and others.
Today, that fire fuels my work as an administrator for one of the largest online IgG4-RD support groups, where I facilitate video calls and offer one-on-one peer support. As a council member, I provide guidance and advocacy for IgG4-RD patients, and I recently cofounded and launched a nonprofit called IgG4-RD Life, dedicated to empowering and serving the IgG4-RD patient community.
I envision a future where no one with IgG4-RD feels lost or alone, where early diagnosis is the norm, and where equitable healthcare is a reality for all. And until that day comes, we will continue to fight, to advocate, and to redefine what it means to live — and thrive — with IgG4-RD.
Note: IgG4-RD News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IgG4-RD News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.
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