My Sjogren's Made Me a Better Doctor
The energy from our recent Virtual Sjogren’s Summit was absolutely incredible. I'm still buzzing from all the conversations, the connections being made, and truly, the healing in action. That human connection truly fosters a healing environment.
As a quadruple board-certified physician specializing in pediatric and adult allergy, immunology, and lifestyle medicine, and someone living with Sjogren's Disease and dysautonomia (specifically orthostatic intolerance, a fancy way of saying my blood pressure does annoying things when I’m trying to have fun!), this dual perspective – seeing the world through the lens of a physician and a patient – is at the very heart of everything I do.
I want to talk about how those two worlds collided in a deeply personal way, something I honestly couldn't have talked about this openly a few years ago. It might sound strange, even a bit Pollyanna, but getting sick, getting that Sjogren’s diagnosis, was actually one of the best things that has happened to me as a physician. My diagnosis didn’t just change my life; it fundamentally broke, and then rebuilt, my entire understanding of what it means to practice medicine. It forced me to become the physician I always wanted to be, but was a bit scared to fully embrace.
The Doctor I Used to Be
Before my diagnosis, by traditional metrics, I was a pretty good doctor. I was quadruple board-certified, on faculty at a prestigious academic institution, graduated with honors, elected into the Honor Society, did research, secured funding, and I knew the textbooks, studies, and protocols inside and out. I was confident in my knowledge and knew my limitations.
But looking back, I was also very limited. Even with inclinations to go beyond the textbook, I was fresh out of training, viewing my mentors and textbooks almost like sacred texts. I saw patients more through the lens of data, lab results, and differential diagnoses (that list of all the things that might be causing your symptoms). I listened, but I was listening for clues that fit the patterns I was trained to recognize. This can lead to anchor bias: we fixate on what we know, especially in a rushed clinical environment, and can inadvertently overlook other possibilities.
If a patient came in with a long list of seemingly disconnected symptoms and "normal" labs, a part of my brain would quietly file it under "anxiety" or "fibromyalgia" – because that's what I was taught. I had empathy, but it was more clinical. I couldn't truly understand the crushing fatigue, the cognitive terror of brain fog, or the profound isolation that comes from feeling dismissed on the other side of the exam room. I was treating diseases, but I wasn't always seeing the whole person living within that perfect storm of symptoms.
Becoming the Patient: A Crash Course in Compassion
Then, the universe decided to give me a crash course. Coming back from maternity leave after my second child, Josie, I experienced profound fatigue that felt like my bones were made of lead. My back stiffness was terrible, my dry eye worsened to the point I couldn’t wear contacts, and my skin and mouth were affected. But the most horrifying part, in hindsight, was the medical gaslighting – not so much from others, but from myself. My own training told me, "This is just tired mom syndrome," "too much stress."
Suddenly, I was on the other side of the exam room, holding my own list of confusing, life-altering symptoms, feeling that same desperation I had seen in my patients, but never truly understood. I experienced the frustration of short appointments (though my colleagues likely gave me a little extra "professional courtesy," a privilege I came to appreciate!). The anxiety of waiting for test results. The soul-crushing feeling of not being believed. And that odd, bittersweet relief when test results finally confirmed my suspicion.
It was the most humbling, infuriating, and ultimately transformative experience. My diagnosis didn’t just give a name to what I was feeling; it gave me a new lens through which to see the patients I cared for. It truly taught me how to be a better healer.
How My Sjogren's Made Me a Better Doctor
Here's what I've learned:
To Listen Differently: I still listen for diagnostic clues, as that's part of the art and science of medicine. But now, I truly listen to the story. The patient's narrative is the most important piece of data we have, more valuable than any single lab test.
To Conceptualize the "Perfect Storm": I stopped looking for one singular diagnosis or root cause. Everything within us and around us is interconnected: the immune system, nervous system, environment, stress, trauma, relationships. You can't pull one thread without tightening another. (I visualize it like a tangled ball of yarn – you have to work through it, thread by thread, to untangle the whole thing.) It’s about identifying the 20% that moves the 80%, the key drivers.
The Vital Importance of the Network: A single doctor can't be the entire answer. A patient needs a team: a network of supportive healthcare professionals, family, and peers. This is the entire reason we built this year's Summit around that very theme: "Building Your Sjogren's Network."
To Live the "Four R" Framework: My own journey forced me to live the framework we developed at Immune Confident Institute:
Recognize the flaws in the system and in myself.
Reclaim my own story and believe my own body.
Rebel against the status quo of dismissive care.
Rise to a better tomorrow.
Everything I’ve learned on this journey, every hard-won piece of insight, has been poured into the work we do, especially the Virtual Sjogren’s Summit. It's the resource I wish I had when I was at my lowest – a manifestation of the kind of medicine I believe in: accessible, empathetic, and built on a foundation of community.
We just wrapped up an incredible live event for 2025! For everyone who joined us and for those who couldn't, we want to make sure this knowledge remains available. We’ve created the Sjogren's Summit Library, an evergreen resource for your entire journey. For just $97, you get lifetime, on-demand access to every single session from all four years of our annual summits (over 80 hours of expert presentations, patient stories, and panels from 2022-2025). This is our commitment to making this information accessible for the long haul. (Special note for our incredible 2025 All Access Pass supporters: check your email for an exclusive thank you offer to complete your library for a fraction of the price!)
My journey with Sjogren's has made me a better physician because it made me a better listener, a better advocate, and frankly, a more compassionate human being. It's taught me that healing happens in community and in those human-to-human connections.
Whether you're a patient, a caregiver, or a healthcare professional, I hope you'll continue this journey of learning with us. Thank you for being here, thank you for being a part of this network, and be well.
