“When this whole thing started, if you put yourself in my shoes, I didn’t have a [diagnosis],” says pop icon Céline Dion.
It is spring in Las Vegas, and she’s speaking to CBC News chief correspondent Adrienne Arsenault in an exclusive English Canadian interview. The topic that brought them together is, of course, what she is referring to now: the health issues that went from benign annoyances to debilitating attacks that caused her career to come to a screeching halt.
“I was trying to, what, survive through this. I was trying to be brave. Because, all my life, I wanted to be the best of me.”
The diagnosis Dion eventually received, and subsequently shared with the world in December 2022, was stiff-person syndrome (SPS) — a rare autoimmune disorder that inhibits the ability to move and, more importantly to Dion, use your voice.
It was an earth-shattering discovery for the musician who’s won five Grammys and 20 Juno awards. And after first rescheduling, then cancelling her planned Courage world tour in 2023, she stepped away somewhat from her public life — focusing on managing the symptoms of a disease without a cure.
Céline Dion tells CBC chief correspondent Adrienne Arsenault about how stiff person syndrome caused her to lose control of her voice and that several specialists were unable to figure out what was going on.
‘More spasm, more cramping’
This interview is part of the My Heart Will Go On singer’s return — both ahead of a June 25 documentary, I Am: Céline Dion that details her life and health struggles, and as an overdue explanation and apology she feels she owes her fans.
Because while she publicly announced that she had been diagnosed with SPS less than two years ago, Dion revealed to CBC her own realization that her voice was beginning to falter happened years earlier.
“At the beginning it was, totally, something light,” she says, describing the 2008 Taking Chances world tour where she first started to lose control of the pitch of her voice — the tone at times shooting up in a way she compared to yodelling.
Those performances went alright: a mild issue written off as possibly a cold. But instead of improving, things quickly started to spiral.
“With the weeks and the months and the years, things started to get more, more often — every day, worse,” she explains. “The body started to get rigid, not flexible, more spasm, more cramping.”
What followed was a decade and a half of worsening symptoms, confused doctors, improvised workarounds and, she says, family obligations and tragedies that kept her from taking a moment to breathe.
As the muscle spasms, stiffness and pain typical of SPS worsened, Dion and her team devised strategies to hide their impact.
They lowered the key of certain songs, omitted other songs and, she says, she adjusted the way she sang — instead of the relaxed, powerful tone she was known for, she required more effort and a more nasal tone to reach the heights that once came easily.
In this intensely personal, candid and revealing Canadian English-language exclusive from the team at The National, Céline Dion opens up to CBC News chief correspondent Adrienne Arsenault about coping with stiff person syndrome, losing the voice that has guided her life and how she is determined to perform again.
‘I had to be brave’
Meanwhile, she was seeing numerous specialists, including ear, nose, throat (ENT) doctors, who would examine her vocal chords and find no nodes or polyps, and send her on her way.
“I went to see every ENT around the world,” she says. “As many shows as I’ve done, I’ve seen as many ENT. And they couldn’t see anything. There was nothing.”
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At the same time, she was taking care of her three sons and nursing her husband, René Angélil, a singer himself who was first diagnosed with throat cancer in 1998. He died in 2016 after several recurrences. The twin sons they had together are now 13 and equipped with panic buttons and training for what to do if they see their mother in a medical emergency.
And all the while, she continued to perform.
“I had to be very brave. Instead of smart,” she says. “That was my thing.”
But eventually, it became too much to hide. She had episodes that could be triggered by crowds, lights, noise and even strong positive emotions: all necessary elements of a Céline Dion concert.
That led to what she describes as “lying, for so many years.” Her shows would be rescheduled or cancelled for everything from tonsillitis to sinus infections.
And then, finally, an answer when she announced that she’d been diagnosed with stiff-person syndrome.
Knowing the name of the condition that had plagued her for the better part of two decades was something of a relief — an escape from the “black hole” of an unknown diagnosis that weighed on her constantly, because, she says, “living in the dark, it’s worse than dying.”
Céline Dion is determined to sing again. In a Canadian English-language exclusive, she told CBC chief correspondent Adrienne Arsenault about battling the disease slowly eroding her voice and the fans who fuel her drive to someday return to the stage.
A brighter outlook
But it was also a sorrow — the combined realization that she would forever have the disease, and the terrifying question of whether she would ever sing professionally again.
But speaking to CBC, she says the outlook is brighter now. There is constant rehabilitation, tweaks to the medication that has increasingly helped her manage her illness — and the mantra helping her along: “I’ll sing again. That’s for sure.”
This interview and the upcoming documentary are, she says, her way of declaring that. Not only to herself, but to the fans she invited to sing along with her.
“When I present the microphone, it’s because they’re part of me. I was 12 years old when I met them. I probably miss them more than singing itself,” she says.
“People need to know that I’m alive … I want to go back on stage. I need to know if I can. They need to know that I love them, and I miss them.”
Celine Dion’s full conversation with CBC News is available on Gem and YouTube, and will broadcast Thursday evening on The National and on CBC Television Friday night at 8 p.m. ET.
The feature documentary I Am: Céline Dion premieres June 25 on Prime Video.
