Celine Dion reveals she hid her Stiff Person diagnosis from public for 17 years

Publish Date
Tuesday, 11 June 2024, 10:14AM
Celine Dion presents the award for Album of the Year during the 66th annual Grammy Awards on February 4, in Los Angeles. Photo / AP

Celine Dion presents the award for Album of the Year during the 66th annual Grammy Awards on February 4, in Los Angeles. Photo / AP

Céline Dion has shared a heartbreaking revelation about her battle with Stiff Person Syndrome - an autoimmune neurological disorder which affects the muscles.

The 56-year-old singer first revealed her diagnosis in 2022; however, in a new interview with Hoda Kotb on the Today show this week, she confessed she first started experiencing symptoms way back in 2008.

Sharing her reasoning for staying quiet about her condition for 17 years, the popstar said she was both trying to understand what was going on and waiting for an official diagnosis, “What did you want me to say? ‘I have …’ what?” she said. “We did not know what was going on.”

The mother of three continued to say in the exclusive interview that at the time she began experiencing symptoms, she “did not take the time” she needed to find out what was going on as she was in the middle of her Taking Chances World Tour, raising her children and supporting her late husband, René Angélil  who was battling throat cancer.

“My husband as well was fighting for his own life,” she exclaimed. “I had to raise my kids, I had to hide. I had to try to be a hero.”

René died in 2016 at the age of 73. The pair were married for 22 years.

Céline Dion In Montreal, Canada on December 17, 1994, during her wedding with René Angélil. Photo / Getty Images

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Singing with the neurological condition feels like “somebody’s strangling you,” Céline explained, “It’s like someone is pushing your larynx, pharynx,” she demonstrated by pressing on her throat. “It’s like you’re talking like that, and you cannot go higher or lower.”

She added that stiff person syndrome can also affect her ribs, abdomen and spine, “Sometimes, when it’s very severe, it can break some ribs. It feels like if I point my feet, they will stay [in that position].

“Or if I cook, my fingers, my hands will get in position. It’s cramping, but it’s like in a position of like, you cannot unlock them.”

Céline said when the time came for her to share her diagnosis with the world, she was torn in two directions of “holding on to my own dreams” and struggling with the “burden” of lying.

Ultimately, she said, “I could not do this anymore.” Adding, “Lying for me, the burden was too much. Lying to the people who got me where I am today, I could not do it anymore.”

It comes as the singer prepares to release her self-titled documentary, I Am: Céline Dion, on June 25. In the Amazon Prime exclusive, she will speak candidly about her diagnosis.

In one particularly heartbreaking scene, the singer can be seen in tears as she admits the condition has taken a huge toll on her career: “Every day, I have to admit, It’s been a struggle,” as shots show her getting help with her mobility.

Céline has remained largely out of the spotlight as she navigates her new life. Speaking to the Mirror before its release, she said: “This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me.

“As the road to resuming my performing career continues, I have [realised] how much I have missed it, of being able to see my fans. During this absence, I decided I wanted to document this part of my life, to try to raise awareness of this little-known condition, to help others who share this diagnosis.”

Céline shared her health battle with the world two years ago when she was forced to cancel her European tour in February last year due to her ongoing battle with its symptoms.

Stiff Person Syndrome is a rare, progressive neurological disorder that can cause stiff muscles in the torso, arms and legs and affects about one in a million people.

- Written by the NZ Herald and republished here with edits and permission

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