The first thing autoimmune disease taught me: pain doesn’t always shout, sometimes, it whispers.

Living with Autoimmune Disease: A Doctor’s Perspective from Both Sides of the Exam Table

I spent years learning how to diagnose and treat conditions like rheumatoid arthritis and Sjögren’s syndrome, poring over lab values and memorizing treatment algorithms. But when I became the patient myself, everything changed. It’s one thing to understand the science behind chronic illness; it’s another to live with the uncertainty, the invisible weight, the good days and the hard days that so many of my patients quietly carry.

Today, I want to share a few lessons I’ve learned from standing on both sides of the exam table, as a doctor, and now as someone living this journey firsthand.

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I was diagnosed with rheumatoid arthritis and Sjögren’s syndrome in 2023, not long ago. It started innocently enough: on a yoga mat, where I noticed swelling between the first and second toe of my left foot. Like many patients, I brushed it off, blaming it on a minor injury I must have missed. I modified my yoga poses, limped a little at work, and after a week, it seemed to resolve.

Then I noticed the knuckle of my right middle finger swollen and tender while painting. Again, I justified it, maybe I strained it somehow. Weeks later, I woke up unable to move my right shoulder. The pain was excruciating. I’m right-handed, and even lifting my laptop between rooms became a struggle. Still, I chalked it up to yoga. It wasn’t until a colleague injected my shoulder with steroids, and I felt almost instant relief, that I started to realize something deeper might be happening.

When the swelling in my toe returned a few weeks later, I finally ordered bloodwork. I still wasn’t thinking of RA or Sjögren’s for myself. But when the labs came back, a colleague pulled me aside: You have RA and Sjögren’s. When would you like to start treatment?

That moment changed everything.

I learned that autoimmune disease can come on so subtly that even someone trained to see it can miss it, even in themselves. I learned how incredibly adaptive our bodies and minds are: how easily we justify our aches and pains in the busyness of daily life, modifying how we move, adjusting without realizing, until the disability becomes undeniable. I learned how quickly life can shift, how something as simple as lifting my arms to carry a laptop could be taken away in an instant.

Today, I listen differently. I listen not just for the classic textbook symptoms, but for the unspoken details, the small ways patients have adjusted their lives without even realizing it. I pay attention to the fatigue behind their smiles, the quiet ways they justify feeling “off,” the modifications they make at home and work.

Because I have been there too.

Flare days are real but often invisible. There are days when I feel tired and achy, when my body feels older and stiffer than it should. Days when I have to pause to shake out my fingers before I can continue typing clinic notes. I’m lucky: I was diagnosed early and started on treatment quickly. Many patients face a much longer, lonelier road to diagnosis.

That’s why I’m passionate about advocacy, about fighting for patients to get the care and medications they need without unnecessary delays. It’s why I carve out time to travel to Washington, D.C., why I lead a local AWIR (Association of Women in Rheumatology) chapter, and why I believe our rheumatology community must stand together, grounded in both science and solidarity. We need greater awareness, not just within the medical community, but nationally.

Living with autoimmune disease has made me a more present doctor and a more grounded human being. I still don’t have all the answers. But I know this: you are not alone, and you deserve care that sees your whole story.

If you’re living with autoimmune disease and this resonated with you, feel free to share or reach out. I’d love to hear your story too.