Céline Dion is opening up about her life-altering neurological disorder ahead of the release of her documentary, I Am: Céline Dion.
The film, set to premiere June 25 on Prime Video, details the Quebec pop superstar’s struggle with stiff person syndrome (SPS), a progressive condition that causes muscle rigidity and painful spasms.
The 56-year-old singer revealed her diagnosis in December 2022, saying the rare illness prevented her from performing. All of her tour dates were cancelled in the months that followed.
She’s returned to the spotlight in recent weeks to talk about her efforts to return to the stage. Here’s a look at what’s been shared so far.
She described ‘years of panic’ trying to control her voice after symptoms began
Dion told TVA’s Jean-Philippe Dion that a spasm in her throat during her 2008 Taking Chances tour was the beginning of “17 years of panic” as she struggled to understand what was happening to her body and to the voice that made her famous.
As the spasms continued and she lost the ability to reliably hit her notes, Dion said she “tried everything” from steam to asthma treatments to powerful medications. She also learned to adapt her songs by changing the way she sang, even as the stress of wanting to perform made her tense up and exacerbated her symptoms. She said it was only after years of “lying” that she decided to confront her illness.
“I didn’t have a diagnosis, I couldn’t sing any more, I couldn’t walk,” she said in the French-language interview broadcast Sunday. “I was holding on to all the chairs in the house, the counters. It wasn’t living, it wasn’t dying, it’s worse than that. It’s waiting, but for what?”
She was troubled by false reports of her death
Dion says she wanted to do a documentary about her health woes partly because false reports of her death circulated on social media a couple of years ago.
“It did hurt me as a mom because my kids, they’re old enough to have their iPads and their iPhones, and they look and they said, ‘Mom, they say you’re dead,”” she told CBC’s Adrienne Arsenault in a sit-down interview posted online Thursday.
Dion said she told her children not to believe everything they hear or see, but it was hard telling them about the severity of her condition “knowing that they already lost a parent.”
“My kids are going to see me having a crisis and they don’t know if I’m going to die,” she said.
Dion said the reason she allowed I Am: Céline Dion director Irene Taylor to come into her home was because she could see “hope” in her situation, and she wanted the world to know what was happening with her.
“It’s going to help me, my family, my kids – and my fans deserve to know what’s happening. This is not a joke and I’m not dead.”
There are panic buttons in her home
Dion says her twin sons, Nelson and Eddy, practice “crisis” drills at home, and there are “panic buttons” in the house in case of emergencies.
When she has an episode, she experiences intense physical pain and her body becomes so rigid that she may need help from her sons, she told People in a cover story published Wednesday.
To ensure the boys are prepared, Dion and her physical therapist practise a “crisis” scenario every couple of months.
“We have panic buttons in the house and they know how to put me on my side,” she said.
She took near-lethal doses of Valium
Dion says symptoms of her illness had persisted for 17 years and, at one point, she was taking near-fatal doses of Valium in order to get through her shows.
In a sit-down interview with NBC’s Hoda Kotb on Tuesday night, the singer said doctors prescribed her diazepam, sold under the brand name Valium, to deal with the spasms before she was diagnosed in 2022 with stiff person syndrome.
Dion says she began taking progressively higher doses in order to perform and built such a high tolerance that she was taking 90 milligrams a day at one point.
“90 milligrams of Valium can kill you. You can stop breathing at one point. The thing is that my body got used to it at 20 (milligrams) and 30 and 40, until it went up. And I needed that,” she said.
“I did not know, honestly, that it could kill me.”
Dion says she eventually weaned herself off the drug with the help of doctors because “it stopped working.”
She vows to return to the stage
Dion says she has been working “very hard” to perform again, though it’s too soon to say when that will be.
She told the May edition of Vogue France that she has an intense, five-day regimen of athletic, physical and vocal therapy.
“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,” she told the magazine.
“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.”
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