Celine Dion On Why She Shared About Stiff Person Syndrome: Exclusive

Céline Dion is further opening up about her health and why she decided to publicly share her diagnosis of stiff person syndrome.

The music legend spoke candidly in an interview with Hoda Kotb that will air in primetime on Tuesday, June 11.

“You said not telling the truth was too much to carry,” Hoda told Dion in a new preview clip from the conversation.

“I could not do this anymore,” the Grammy winner replied. “We did not know what was going on.”

Dion first shared her stiff person syndrome diagnosis in an Instagram video in December 2022, when she announced she was postponing a number of tour dates.

The rare neurological disorder is the stiffening of the muscles in the torso, arms and legs, according to the National Institute of Neurological Disorders and Stroke. It can also lead to sensitivity to noise, touch and emotional distress, which can set off muscle spasms.

While talking with Hoda, the “My Heart Will Go On” singer said she “did not take the time” to rest or figure out what was happening her.

“I should have stopped, take the time to figure it out,” Dion said. “My (late) husband (René Angélil), as well, was fighting for his own life.”

“I had to raise my kids. I had to hide. I had to try to be a hero. Feeling my body leaving me, holding onto my own dreams,” she continued. “And the lying for me … the burden was too much.”

Dion previously shared in a Vogue interview that it was 2008 during her “Taking Chances World Tour” when she first felt the early signs and symptoms of the disorder. At the time, she said, she was “having difficulty controlling” her voice and later noticed her muscles stiffening.

Dion told Hoda that before she revealed her stiff person syndrome, she felt like she was “lying to the people who got me where I am today.”

“I could not do it anymore,” she said.

Additionally, in a June 7 excerpt from the sit-down with Hoda, Dion described how she feels when she tries to sing.

“It’s like somebody is strangling you. It’s like somebody is pushing your larynx/pharynx this way,” she said, demonstrating with her hands.

The Canadian icon also explained that because of her disorder, she’s broken ribs and her feet and hands will stiffen up to the point where she can’t move them. “You cannot unlock them,” Dion said.

Dion has not performed in years and in April 2024, she told Vogue France she isn’t sure when she will return to the stage.

“I can’t answer that,” she told the magazine. “Because for four years I’ve been saying to myself that I’m not going back, that I’m ready, that I’m not ready … As things stand, I can’t stand here and say to you: ‘Yes, in four months.’ I don’t know … My body will tell me.”

Dion will further discuss her health issues and more when her full interview with Hoda airs June 11 at 10 p.m. ET on NBC. The intimate interview comes ahead of her documentary, “I Am: Celine Dion,” which will be released on Prime Video on June 25.