Carrie Ann Inaba doesn’t let Sjögren’s syndrome stand in her way | NIH MedlinePlus Magazine

Carrie Ann Inaba is a familiar face in millions of American homes. A lifelong dancer, she has become well-known as a judge on ABC’s competition show “Dancing with the Stars.” Last year, she became co-host of the CBS daytime talk show “The Talk.”

Outside of her on-camera career, Inaba is a self-described warrior for those with Sjögren’s syndrome, a difficult and often painful autoimmune disease she has herself. As an Awareness Ambassador for the Sjögren’s Syndrome Foundation, she spreads hope and comfort to others with the condition. In this exclusive interview, she describes how meditation, yoga, and a sense of community have helped her thrive despite her diagnosis.

Tell us about your diagnosis.

Like with many autoimmune diseases, my Sjögren’s diagnosis was not easy to come by. I remember telling my doctor that my eyes had been dry for years. I asked him if I had Sjögren’s and he said I didn’t. It wasn’t until many years later that I was diagnosed by a rheumatologist [a doctor who treats musculoskeletal disease and autoimmune conditions]. And that’s because I was going through a lot of pain and fatigue. Getting the diagnosis was overwhelming and I went through a period of depression and anxiety. That was probably because I was not diagnosed for so long.

You have other autoimmune diseases as well.

Yes. Sjögren’s and other autoimmune conditions often come in pairs. I also have fibromyalgia and rheumatoid arthritis. And just last year I found out that I also had lupus. I only found that out when I went in for a colonoscopy and I read it in my medical notes. 

How do you cope with your conditions and lead such a busy life?

“Sjögren’s has made me stand up and set limits and boundaries so I can take care of myself.”

– Carrie Ann Inaba

Autoimmune conditions are very challenging. It is no joke when they call us Sjögren’s warriors. We have to be our own warriors because each one of us struggles differently and there are so many different combinations of autoimmune conditions. It is really important to keep track of your symptoms and to notice what each does to you.

One secret I use is to keep a calendar. I like to look at it a month at a time because I need to gauge my energy. I know if I have a really good day, I might have a bad day next. I call it the roller coaster of energy. So, when I can see my life a month at a time it is easier to plan my days off.

Another key thing is to get the nutrition I need every day. I start each day with a protein shake. Because exercise can cause pain related to my conditions, I didn’t work out for years. Thankfully, over time, I have learned that a slow and steady approach to my workouts helps me avoid flare ups of my conditions. Working out has also helped me get in tune with my body and that is important. Listen to your body. It knows.

How important is it to keep a positive attitude?

Having a realistic attitude is important. My natural tendency is to be a Type A personality. So I feel badly when I’m not able to accomplish much on a down day. But I have learned to be more relaxed and I’m much happier for it.

I also have an online project called Carrie Ann Conversations. I share my insights on how to live a good life in general and for those with conditions like Sjögren’s. I try to bring positivity to others. I have found that when you give back to others and create a sense of community, you will feel less alone and more positive in everything you do. 

But it’s not just about being positive. It’s about being honest with how you really feel and trying to create an environment for yourself to live in that supports your best life. And that includes the up and the down days.

Tell us how you work to relieve stress and pain.

Yoga has been a lifesaver for me. The breathing techniques are so powerful for calming your system down and relieving stress. I use a lot of meditation apps. I’ve been using one for years every night before I go to bed and when I’m in need of a short, five-minute break during the day. I also use acupuncture and massage to help relieve pain, as well as medications.

What is your message and advice to others with Sjögren’s?

Sjögren’s is a complicated disease. Don’t let people tell you it is all in your mind. It is important for you to let those around you know about your health. Sjögren’s is not something that others can see. On your good days, you look fine and your energy is great. On your bad days, it is a whole different story.

I have several tips for those with Sjögren’s. I sleep so much better when I use a humidifier. I also put eye drops in my eyes right before I go to bed and when I wake up. For my job, obviously, I talk a lot. So, I use a moisturizing spray for my dry mouth. I always carry water with me and I always have mints. It is important to keep your mouth hydrated. I have another trick to keep my skin moisturized. I learned it when I was training dancers in Japan. Put body oil over body butter. I also reapply moisture twice a day.

You have called Sjögren’s a gift. Why is that?

The gift of Sjögren’s is that it has taught me to pay attention to my needs. And as a dancer I know that more than most people. Your body is such an amazing gift. But if you don’t take care of it, it doesn’t work so well. Sjögren’s has made me stand up and set limits and boundaries so I can take care of myself.

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