Celine Dion reveals why she shared Stiff Person Syndrome diagnosis

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In her upcoming interview with the Today show’s Hoda Kotb, Celine Dion is opening up on her decision to go public with her ongoing battle with Stiff Person Syndrome (SPS).

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Dion, 56, was diagnosed with the debilitating illness in 2022, but she tells Kotb that she had been suffering from symptoms for years but “did not take the time” to rest or figure out what was happening to her.

“I should have stopped, take the time to figure it out… my (late) husband (Rene Angelil) 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. And the lying for me was … the burden was like too much,” she says in their conversation that airs in primetime on Tuesday, June 11.

Dion revealed she had been diagnosed with Stiff Person Syndrome in an Instagram video in December 2022, after she announced she was cancelling her upcoming tour.

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“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.

After suffering for symptoms for over a decade, the All By Myself singer said her busy work schedule prevented her from pausing to break and figure out what was going on with her health.

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Dion tells Kotb that she felt like she was “lying to the people who got me where I am today,” adding, “I could not do it anymore.”

In a clip from her chat with Kotb that was shared last week, Dion described what it feels like when she tries to sing nowadays.

“It’s like somebody strangling you,” Dion 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.” 

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The six-time Grammy winner then detailed how 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.”

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.”

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.”

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That same month, the music icon told Vogue France that she’s committed to returning to the stage and performing live again.

“The way I see it, I have two choices. Either I train like an athlete and work super hard, or I switch off and it’s over, I stay at home, listen to my songs, stand in front of my mirror and sing to myself. I’ve chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best I can be,” she said.

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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