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From doctor to patient: my Sjogren’s journey and a challenge to colleagues

As physicians, we are trained to dissect symptoms and to hunt for a diagnosis. But my own journey with Sjogren’s, like my patients’, wasn’t a textbook case. It was a puzzle with pieces scattered over decades, ignored or dismissed at each turn, including by myself.

There’s the college student, fearing the agony a simple meal might bring, never dreaming of asking why. The med student, convinced of an impending heart attack, was told by her mother (and, by extension, the medical mindset she was steeped in) that it’s “all in your head.” The overworked intern masked her back pain with ibuprofen, never getting a proper workup.

It wasn’t until a concerned dental hygienist mentioned my dry mouth that the pieces started to click. Even armed with my medical degrees, I was 35 before I was forced to confront the fact that I wasn’t the “invincible” doctor-mom; I was the patient.

Confirmation brought relief, then the fear of Sjogren’s systemic implications. Exhaustion unlike any I’d witnessed in patients. Fevers that raged, jaundice followed by a liver biopsy— all required my physician connections and a few cell phone numbers to advocate for timely care. After the dust settled, this made me wonder, what happens to those without my knowledge or immense privilege? How many are dismissed as anxious or bounced between specialists with normal labs? A lot since an estimated 40 percent are seronegative.

Sjogren’s taught me more about medicine than any textbook. It made me question the system I’m both a product of and a victim of. The outdated stereotypes based on our multiple-choice board exam answers need to go along with the outdated term of the syndrome. Sjogren’s is a serious systemic disease. We need doctors who listen beyond the obvious and who aren’t afraid of the messy, multi-system complaints that don’t fit the mold. Who instead of throwing their hands up in the air while placing yet another referral, get curious. Sjogren’s’ can hide behind one in a hundred faces, and too many go unseen. In fact, 75 percent of those with Sjogren’s remain undiagnosed.

As we conclude another Sjogren’s Awareness Month, I challenge my colleagues to think beyond dry eyes and dry mouth. Consider the young woman with fatigue, the middle-aged man with joint pain, and the one labeled with fibromyalgia. It could be Sjogren’s, and that diagnosis matters. This is more true now than ever with multiple promising treatments in phase 3 trials.

My voice carries the dual weight of doctor and patient. It’s a testament to the gaps in our knowledge and a frustrated plea to the healers I trained alongside. Imagine a world where Sjogren’s is no longer an invisible illness, where swift diagnosis minimizes damage and offers hope. It starts with changing our mindsets, and as colleagues, we owe that to our patients and to ourselves. After all, the line between doctor and patient is thinner than we think.

Kara Wada is a board-certified academic adult and pediatric allergy, immunology, and lifestyle medicine physician turned autoimmune patient. She can be reached at Dr. Kara Wada and on InstagramYouTubeFacebook, and LinkedIn. She is a national expert, sought-after speaker, advisor, and host of the Becoming Immune Confident Podcast. She is the founder of the Demystifying Inflammation Summit and Virtual Sjogren’s Summit. 


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