Celine Dion says Stiff Person Syndrome fight ‘like being strangled’

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In a preview of her upcoming interview with Today’s Hoda Kotb, Celine Dion says that trying to sing while suffering from Stiff Person Syndrome (SPS) is “like somebody is strangling you.”

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Ahead of her primetime special, which will air June 11 on NBC, the legendary Canadian singer details her struggle living with the debilitating illness.

“It’s like somebody strangling you,” Dion, 56, said of trying to sing. “It’s like somebody’s pushing your larynx and pharynx this way,” she gestured putting her hand to her throat.

Raising her voice, Dion said: “It was like talking like that, and you cannot go high or lower,” she demonstrated. “It gets into a spasm.” 

Dion then detailed how the SPS can affect other areas of the body like her abdomen and spine. 

“It feels like if I point my feet, it will stay in (that position),” Dion said. “Or, if I cook — because I love to 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.”

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Dion made the scary revelation that she has “broken ribs at one point.”

“I have broken ribs at one point because sometimes when it’s very severe, it can break some ribs as well.”

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Dion’s incurable condition, which she was diagnosed with in December 2022, is rare and causes severe and persistent muscle spasms that can strike without notice.

“Unfortunately, these spasms 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,” she told fans at the time.

Symptoms of the affliction mimic the characteristics of other ailments such as Parkinson’s Disease or multiple sclerosis. The muscle spasms associated with SPS sometimes appear out of the blue and can be triggered by loud noise or emotional distress, according to the Cleveland Clinic.

The muscle spasms can be severe enough to affect mobility and cause a patient to fall. As it progresses, the disease makes if more difficult to walk and falls can become more frequent.

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Last month, Kotb revealed that Dion “almost died” during her battle with SPS.

“Celine Dion at some point, she is now much better, but at some point she almost died, which is something that she says. It was a scary time and she’s dealing with this,” Kotb told Jenna Bush Hager during a segment of Hoda and Jenna, teasing her upcoming chat with the music superstar. 

“I travelled to Las Vegas, and I got to have a rare conversation with Celine Dion. She has not performed live in years and years and a lot of people have wondered what happened and what was wrong,” she said earlier in the morning on the Today show. “She was diagnosed with a terrible disease and at one point she wondered if she was going to make it, whether she was going to live through it.”

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Dion will talk about what her battle against SPS has done to her voice and the “possibility of a comeback.”

Kotb said her conversation with the six-time Grammy winner was “emotional” and that she sang for her when they met and sounded “incredible.”

Dion will also open up about her health struggles in a new documentary coming to Prime Video later this month, titled I Am: Celine Dion.

In April, Dion shared a first-look photo from the film to her Instagram account, promising that the documentary will offer “a raw and honest behind-the-scenes look at the iconic superstar’s struggle with a life-altering illness.”

“Serving as a love letter to her fans, this inspirational documentary highlights the music that has guided her life while also showcasing the resilience of the human spirit,” the My Heart Will Go On singer’s team wrote alongside the image which shows Dion holding up an empowered fist.

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Directed by Oscar-nominated filmmaker Irene Taylor, the career-spanning doc will capture the music icon’s “never-before-seen private life” as it “takes viewers on a journey inside Celine’s past and present as she reveals her battle with SPS and the lengths she has gone to continue performing for her beloved and loyal fans.”

In a trailer for the film, Dion said that she is working hard to get back onstage to perform in front of her fans.

“It’s not hard to do a show, you know. It’s hard to cancel a show,” she says tearfully. “I’m working hard everyday. But I have to admit, it’s been a struggle. 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. I won’t stop.”

Dion’s conversation with Kotb airs on Tuesday, June 11, at 10 p.m. ET on NBC. 

I Am: Celine Dion will be released on Prime Video on June 25.

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