Céline Dion‘s decision to publicly share her diagnosis with stiff-person syndrome was one that weighed heavily on the music legend.
During a sit-down with Hoda Kotb teased on the Today show on Monday, June 10, Dion opened up about her experience with the rare neurological disorder, admitting she kept quiet about it at first because she was still trying to understand what was happening with her health.
“What did you want me to say? ‘I have…’ what?” Dion, 56, said. “We did not know what was going on.”
Dion first started experiencing symptoms of the disorder — which causes debilitating muscle spasms — during her Taking Chances World Tour in 2008. She wouldn’t go public with her diagnosis until December 2022, when she announced in an Instagram video that she was postponing a number of performances.
“I did not take the time I should have stopped, take the time to figure it out,” Dion recalled to Kotb, noting that at the time she started noticing the early signs of her condition, her late husband René Angélil was undergoing treatment for throat cancer.
“My husband as well was fighting for his own life,” she said. “I had to raise my kids, I had to hide. I had to try to be a hero.”
She was also trying to process her own emotions around her condition. “Feeling my body leaving me, holding on to my own dreams,” Dion said, sharing some of the fears that were going through her head at the time.
Eventually, Dion says she felt like she had to tell the truth. “I could not do this anymore,” she said. “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’s interview with Kotb will air in full on Tuesday, June 11, at 10 p.m. ET.
In an earlier clip from the conversation, the five-time Grammy Award winner opened up about the effect the condition had on her voice. “It’s like somebody is strangling you. It’s like somebody is pushing your larynx/pharynx,” she said, raising her voice to demonstrate the effect. “It was like talking like that, and you cannot go high or lower.”
She went on to note that the stiffness can sometimes feel like it’s locked into place. “It feels like, if I point my feet, they will stay in [that position],” said the “Power of Love” singer. “It’s cramping but it’s like in a position where you cannot unlock them. I have broken ribs at one point because sometimes when its very severe, it can break.”
The sit-down comes ahead of I Am: Céline Dion, the Prime Video documentary that follows the Grammy-winning icon as she grapples with her rare disorder and fights to get back on stage.
“I wasn’t ready to say anything before,” Dion said in the emotional trailer, “but I’m ready now.”
“I miss it so much. The people, I miss them. If I can’t run, I’ll walk. If I can’t walk, I’ll crawl,” she adds, proclaiming that whatever it takes to take control of her health and get back on stage, “I won’t stop.”
