Céline Dion Details Living With Stiff-Person Syndrome for Nearly Two Decades Before Diagnosis

Céline Dion is shedding light on her battle with stiff person syndrome (SPS), and just how long she had been experiencing symptoms before doctors finally identified the rare neurological disorder.

In an interview with Harper’s Bazaar published Aug. 18, the 58-year-old said she lived with symptoms for over 17 years before receiving her 2022 diagnosis.

Dion is gearing up for a highly-anticipated return to the stage with a five-week residency in Paris next month, followed by a three-week residency in May 2027.

“They paid for tickets. They bought my records. They gave me that luxury. So the least I can do is tell them that I’m alive,” Dion told the outlet. “It’s been so long. I would like to offer them something to show how I’ve missed them.”

SPS is a progressive, rare neurological disorder that causes the nervous system to become hyperexcitable, according to the National Institute of Neurological Disorders and Stroke.

Symptoms include stiff muscles in the torso, arms, and legs, as well as greater sensitivity to noise, touch, and emotional distress, which can set off muscle spasms.

For Dion, the symptoms proved consequential, first emerging during her 2008 “Taking Chances World Tour,” when she struggled to control her voice and had to lower the key of her songs. As the condition progressed, muscle stiffness also made walking increasingly difficult.

The five-time Grammy winner publicly announced her diagnosis in a video on Instagram in 2022 after canceling her European tour, which was scheduled for the following spring.

In her first broadcast interview with NBC’s “Today” show in 2024, the singer said she was relying on medication to manage her symptoms, revealing she developed a high tolerance to Valium.

She said she had taken as much as 90 milligrams of the drug in a day, without initially understanding how dangerous that level could be.

“Ninety milligrams of Valium can kill you; you can stop breathing,” she said during the June 2024 interview. “And at one point, the thing is that my body got used to it at 20 and 30 and 40 [milligrams] until it went up.”

“I needed that; it was relaxing my whole body for what … for two weeks, for a month,” she continued. “Okay, the show must go on; here we go, I’m fine. But you get used to it, it doesn’t work anymore. More, more, more.”

Her experience was later documented in the 2024 film “I Am: Céline Dion,” which gave audiences a look into her rehabilitation and her day-to-day life navigating the physical limitations of SPS.

That same year, Dion donated $2 million through her “Céline Dion Foundation” towards research focused on autoimmune neurological disorders, offering support to an effort to uncover more effective treatment options.