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What Celine Dion Said on Her NBC Special About Having Stiff Person Syndrome
Ahead of her documentary, I Am: Celine Dion, Celine Dion sat down with NBC's Hoda Kotb for a candid discussion about living with Stiff Person Syndrome.
Celine Dion sat down with NBC's Hoda Kotb for a candid discussion about living with Stiff Person Syndrome (SPS), a "rare autoimmune neurological disorder" that Johns Hopkins Medicine notes "commonly causes muscle stiffness and painful spasms that come and go and can worsen over time." For context: The National Library of Medicine reports SPS affects roughly one in 1 million people.
Dion revealed in 2023 that she has SPS, which, for her, mostly affects her upper-body muscles, including her throat. As a world-renowned singer and entertainer, this, of course, has led to complications in her professional life. And she discusses all of this and more in her interview with Kotb.
Celine Dion opened up to NBC's Hoda Kotb about living with Stiff Person Syndrome (SPS)
Their full conversation aired Tuesday, June 11 on NBC primetime at 10/9c, right after America's Got Talent. A preview of the interview aired on TODAY the morning of June 11.
Read details, below.
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Celine Dion says she first noticed her Stiff Person Syndrome symptoms 17 years ago
"I was on my Taking Chances World Tour," Dion says. "I was in Germany. I said to my assistant and my people, 'I don't know if I can do the show. I don't know what's happening.' I was very, very, very scared."
Dion adds, "I could say, 'It's just like a little cold starting,' or, 'I pushed too much. It's the third show in a row. I'm working too hard.' But the thing is it was different. I started to feel like [my] body was getting more rigid."
That said, Dion did go on stage in Germany that night. "I started to sound more nasal," Dion recalls. "My whole team, they were trying to find my voice, too."
While everything looked fine on the outside, Dion felt a loss of control. "We lowered the songs a little bit with the keys and projected more nasal and hoped," she says. "The rest of [that tour] I did my very best because my fans accepted my invitation, and I didn't know what to tell them. 'I will do my best tonight?' No, you're gonna give your all, or you don't come at all."
Celine Dion reached a breaking point lying to her fans about her Stiff Person Syndrome
When Dion first started canceling shows, she told fans it was because of throat and sinus infections, but she reached a point where hiding the truth was frustrating.
"I could not do this [lie] anymore," Dion says. "What do you want me to say? We did not know what was going on. I did not take the time. I should have stopped. Take the time to figure it out."
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At this time, her late husband, René Angélil (who passed in 2016 from cancer), was also, as Dion remembers, "fighting for his own life."
"I had to raise my kids. I had to hide. I had to try to be a hero [while] feeling my body leaving me, holding on to my own dreams. And lying [to my fans], for me, the burden was too much. Lying to the people who got me to where I am today, I could not do it anymore."
Celine Dion's Stiff Person Syndrome has caused broken ribs
"I had broken ribs at one point," Dion tells Kotb. "Because sometimes when it's very severe, it can [spasm so hard and break]."
A documentary about the music icon's experience, I Am: Celine Dion, comes out June 25. Its director, Irene Taylor Brodsky, tells Kotb, "Her body was enduring something that was unimaginable, and I wasn't sure if she was aware of it, and I wasn't sure if she was going to survive it."
Celine Dion will perform on stage again
Through, as Kotb notes, "intense physical therapy, vocal rehabilitation, and medication," Dion has been able to find a path forward in her performing career. However, an exact date or timeline for when she'll perform again is not known right now.
"[SPS] didn't take anything away from me," Dion says. "I'm going to go back on stage, even if I have to crawl. Even if I have to talk with my hands. I will. I am Celine Dion because today, my voice will be heard for the first time — not just because I have to or because I need to. It's because I want to. And I miss it."
