Celine Dion Says ‘Lying’ About Stiff-Person Syndrome Was a ‘Burden’: I Had to ‘Be a Hero’

Céline Dion is opening up about what inspired her to come forward with her stiff-person syndrome diagnosis after many years of suffering in silence.

“I could not do this anymore,” the 56-year-old musician told Hoda Kotb in a new clip from her upcoming Today show interview. “What do you want me to say? … We did not know what was going on.”

Dion acknowledged that she “did not take the time” to come to terms with her health battle. “My husband, as well, was fighting for his own life,” she continued. (Her husband and longtime manager, Rene Angélil, died in January 2016 at age 73 following a long battle with cancer.) “I had to raise my kids. I had to hide. I had to try to be a hero. Feeling my body leaving me, holding on to my own dreams.”

She explained, “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.”

Dion revealed her diagnosis in a December 2022 Instagram video, sharing that she had been fighting a “very rare neurological disorder” for some time. “It’s been really difficult for me to face these challenges and to talk about everything that I’ve been going through,” she said.

According to Dion, the condition “affects something like one in a million people” and causes spasms that “affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.”

At the time, Dion was forced to postpone her tour while recovering. “I have a great team of doctors working alongside me to help me get better and my precious children, who are supporting me and giving me hope,” she continued. “I’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again, but I have to admit it’s been a struggle.”

Dion shared son René-Charles, 23, and twins Nelson and Eddy, 13, with late husband Angélil. Throughout her health battle, she’s made a handful of public appearances with her children, recently bringing the boys to a Rolling Stones concert in Las Vegas.

Dion’s emotional sit-down interview coincides with the release of her upcoming Prime Video documentary, I Am Céline Dion, which debuts later this month. In a previous clip from her conversation with Kotb, Dion described the sensation of singing through her stiff-person symptoms.

“It’s like somebody is pushing your larynx/pharynx this way,” she explained, adding that it feels like “somebody strangling you.”

The spasms can occur all over the body. “It’s cramping, but it’s, like, in a position of you cannot unlock them,” Dion said. “I had broken ribs at one point, because sometimes when it’s very severe, it can break some ribs as well.”

While she’s taken time away from the spotlight to focus on her health, a source exclusively told Us Weekly in December 2023 that Dion hopes to perform again someday.

“Céline is a fighter. She doesn’t have as much control over her muscles as she did before, but she’s working with doctors and physical therapists to get better,” the insider told Us. “Céline has been taking time to focus on her health but plans to take the stage again once she is given the go-ahead by her medical team.”

A preview of Dion’s interview with Kotb will air Tuesday, June 11, on Today, followed by the full primetime special at 10 p.m. ET.