Carrie Ann Inaba on Living With Sjögren’s: “Trust Yourself and Speak Up”

Living with Sjögren's disease can be overwhelming, especially because many of its symptoms are invisible to others. For Dancing With the Stars judge Carrie Ann Inaba, the journey to diagnosis was long, frustrating and deeply personal.

Now, Inaba is partnering with Novartis to raise awareness through the Sjöut! campaign, encouraging patients to speak up, seek answers and build supportive communities through Sjöut Strong. In an interview with The Educated Patient, she opens up about her early symptoms, emotional challenges and what she wants others to know about advocating for their health.

You’ve described Sjögren’s as an invisible disease. Looking back, what were some early symptoms you wish you had taken more seriously — and what should patients watch for?

Great question. First, I just want to say I’m really happy to be here partnered with Novartis to talk about Sjögren’s disease, because it’s very near to my heart and something that’s very challenging to live with.

In the beginning, I was having issues with my eyes. I kept seeing an ophthalmologist because they were extremely dry — so much so that my corneas were being damaged. I remember thinking, “Something is really wrong here.” At the same time, I was experiencing body pain and extreme fatigue, but I didn’t connect those symptoms. I was just trying to figure out what was happening with my eyes.

It was a frustrating time because I wasn’t getting answers. Eventually, I found my way to a rheumatologist, which is the type of doctor you need to see for Sjögren’s disease. From there, I was sent to a specialist who did the Schirmer test to measure moisture in my eyes, along with blood work, and that’s when I was diagnosed.

I felt relieved and sad all at once. It’s a big diagnosis, and right now there’s no U.S. Food and Drug Administration (FDA)-approved treatment specifically for Sjögren’s disease, so it can feel overwhelming.

What people should understand is that it’s not just dry eyes or dry mouth; it’s a full systemic autoimmune disease. Symptoms can include brain fog, fatigue, pain, dryness in multiple areas like the mouth, eyes, skin and even more private areas and, in some cases, organ involvement. Everyone experiences it differently, which is why it’s often so hard to diagnose and why it can take a long time to get answers.

You’ve spoken openly about the emotional impact of your diagnosis. How did you navigate that, and what helped you cope?

Having Sjögren’s disease is complicated. For me, it felt very isolating because people don’t always believe you. When you’re walking around with something that doesn’t have a visible presence, it can really affect your emotional well-being. You almost start to doubt yourself.

That’s one of the reasons this campaign is so important. It’s about helping people trust themselves and learn to speak up — to find the words to explain what they’re experiencing, whether it’s to their doctors or to the people in their lives.

I also think it’s important to mention that Sjögren’s was reclassified from “syndrome” to “disease,” and that’s a really big step. It may sound small, but it changes how seriously it’s taken by health care providers, insurance companies and even friends and family. That validation matters when you’re living with something that’s often misunderstood.

What does a strong doctor-patient relationship look like to you now?

It’s all about communication and honesty. You may not always understand how your symptoms are connected, but it’s so important to write everything down and share it with your rheumatologist.

Some symptoms might feel embarrassing or too personal, but your doctor can’t help you unless they see the full picture. That’s how they start connecting the dots.

I also think it’s really important to prepare for your appointments. Time is limited, so do your research beforehand, understand your symptoms and come in with questions. That way, you can really use your time effectively.

For me personally, managing my condition also means managing my energy. I make sure to schedule rest — it’s not optional. Sometimes I’ll take a full day or at least a few hours before something important to “bank” my energy, and I always plan time afterward to recover. That’s been essential for me, and I think a lot of people with Sjögren’s experience that same need.

Through your advocacy work, you’re encouraging others to speak up. What does that look like in real life, and what’s one step someone can take today?

One step someone can take today is to educate themselves. The Sjöut campaign offers tools, resources and a community where people can hear others’ stories and feel less alone.

If you’re dealing with unexplained symptoms, speak up — that’s your path to a diagnosis. And if you’re not getting the care you need, it’s OK to find a new doctor. You deserve that care.

Advocacy, to me, means trusting yourself. You are the only one who truly knows what’s going on in your body. Even if you feel dismissed or misunderstood, keep speaking up and keep searching for answers.

Is there anything else you’d like patients to know?

I want people to feel empowered. What you’re experiencing is real. Even if the symptoms don’t seem connected, they might be.

And community is so important. Whether it’s friends, family or an online group, having support makes a huge difference. We need each other to get through this.

That’s what this is all about: helping people feel seen, heard and supported.

This interview was edited for clarity.