Sjögren’s (pronounced show-grunz ) is an autoimmune condition that often hides in plain sight. For Dancing with the Stars judge Carrie Ann Inaba, it didn’t just hide. It lingered.
It took her ten years to get the right label. Ten years of pain. Fatigue. Misunderstanding.
Inaba, who also co-hosted The Talk, recently opened up about that long road. Why was it so hard? Why did doctors miss it? The answer lies in the nature of the disease itself. It is invisible. And invisible illnesses are easily dismissed.
The “Invisible” Disease Nobody Sees
Sjögren’s is the second most common rheumatic autoimmune disease in the U.S. It affects roughly four million people, per the Sjögren’s Foundation.
Yet, ask someone at a cocktail party what it is. They might ask you to say it again. Autocorrect even changes it to “Shogun’s” sometimes.
“It is a often misunderstood autoimmune disease,” Inaba told me. “Not recognized by a lot of people. Including doctors.”
Spreading awareness isn’t just nice. It’s necessary. Because when no one sees your suffering, it’s hard for anyone to validate it. Not even yourself.
A Decade of Pain Before the Diagnosis
Inaba was dancing since she was three. She was a Fly Girl on In Living Color from 1990 to ’92. She knew body pain. She knew the ache of overwork.
This pain was different.
Heavy. Relentless. Systemic.
“I was experiencing dry eyes… widespread pain, incredible fatigue,” she recalled. “Which was unlike what I was experiencing before.”
For years, she assumed it was just dance injuries. But this felt heavier. Like her body was turning against itself.
“It was unyielding,” she said. “Unpredictable. It changed my life.”
So, she danced around the problem. Metaphorically and literally. She searched for answers for a decade. Doctors saw pieces. But they didn’t see the picture.
The Eye Exam That Changed Everything
The turning point came from an ophthalmologist. Not a rheumatologist initially.
My corneas were getting scratched.
That specific symptom—dry corneas—triggered the referral. An eye doctor suggested a specialist who could look deeper. A rheumatologist.
“The rheumatologist ran specific tests that only rheumatologists run,” Inaba said.
And there it was. 2013. Diagnosis.
It was intense. The news came right around the time her father passed away. A double blow. But at least it was a name. At least it was an explanation.
Why Sjögren’s Is So Hard to Detect
You can’t just take a pill to find Sjögren’s. There is no single test.
Doctors have to be detectives. Sherlock Holmes, but with more lab coats. They piece together symptoms, blood work, and imaging.
Common diagnostic tools include:
- Eye tests: Schirmer tear test (paper strips to measure moisture) or slit-lamp exams.
- Blood tests: Looking for specific antibodies like Anti-SSA (Ro), Anti-SSB (La), ANA, or rheumatoid factor.
- Saliva gland imaging: Sialograms or scintigraphy to check output.
- Biopsy: A small tissue sample from the lower lip to check for inflammatory cells.
It’s complex. You need a doctor who listens. Who connects the dots. Otherwise, it’s easy to mistake Sjögren’s for stress. Or aging. Or just “being tired.”
What’s Actually Happening Inside Your Body
Sjögren’s is a case of mistaken identity. Your immune system decides your normal tissue is an enemy.
It generates weapons. Antibodies. Inflammatory cells.
They target moisture-producing glands. Eyes. Mouth. Vagina. Sometimes skin, joints, lungs, kidneys, or liver.
That’s why symptoms vary wildly.
- Dry eyes.
- Coughing.
- Swallowing difficulties.
- Joint pain.
- Fatigue that feels like flat-out exhaustion.
Complications can include yeast infections, cavities, bronchitis, or even lymphoma in severe cases. It’s systemic. It’s everywhere.
The Mental Toll of Being Gaslit
Invisible illness is isolating. When people don’t believe you’re sick, you start doubting yourself.
“Having a disease that’s invisible… that people didn’t take seriously… it was hard,” Inaba admitted. “Sometimes you don’t even believe it yourself. I sometimes didn’t take myself seriously.”
She spoke bluntly about gender bias in medicine. “As women, we’re often gaslit in doctors’ appointments.”
She was right. Women and minorities frequently face delays. Perimenopause. ADHD. Autoimmune diseases. It’s a pattern.
Inaba kept asking for the Schirmer’s test. A doctor refused. Again. And again.
“I kept asking. He kept saying no.”
She kept going. Until she found someone who actually listened. Someone who ran the test. Who found the rheumatologist who finally gave her the diagnosis she needed.
Managing the Condition Without a Cure
There is no cure for Sjögren’s. Not yet.
So, you manage. You mitigate.
- Dry eyes: Artificial tears.
- Dry mouth: Sugar-free gum, candy, or medications.
- Joints: NSAIDs, low-dose prednisone, or disease-modifying drugs.
- Dental care: Regular checkups to prevent cavities, which are more common without saliva.
It’s about harm reduction. Keeping the body functional. Keeping the pain manageable.
Finding a Voice Through the Sjöut Campaign
Inaba is using her platform to push back.
She partnered with Novartis on the Sjöut campaign. The message? “People living with Sjögren’s are tired of not being heard.”
The name change also helped. Syndrome to Disease. Subtle, but meaningful. It signals seriousness.
“It is so interesting how this whole campaign… helped me find words,” she said.
It’s not just about medicine. It’s about humanity.
“Helping someone else understand your journey is like being human. We all have a right to speak. To be compassionate. To listen.”
Moving Forward
Better management has brought Inaba back to the work she loves. She recently signed a first-look deal with ABC.
A first-look deal means a studio gets the right of first refusal on her projects. It’s a vote of confidence.
“My health is better managed,” she said. “I can start to look forward again.”
For a long time, she couldn’t look forward. She was stuck in the pain. Stuck in the diagnosis limbo.
Now? She’s moving. Not cured. Not perfectly controlled. But better. And for now, that’s enough.
Is that all there is? Maybe not. But it’s a start.
