“When this all started, if you put yourself in my shoes, [diagnosis]” says pop icon Celine Dion.
It's spring in Las Vegas, and she's speaking with CBC News chief correspondent Adrienne Arsenault in an exclusive interview for English Canada. Their meeting, of course, is about the very thing she's talking about now: a health problem that went from a harmless nuisance to a debilitating attack that brought her career to a screeching halt.
“I was trying to overcome this. I was trying to be brave. Because my whole life, I've wanted to be the best version of myself.”
The diagnosis Dion eventually received, and then made public to the world in December 2022, was Stiff Person Syndrome (SPS), a rare autoimmune disease that inhibits the ability to move and, more importantly for Dion, the ability to speak.
It was a shocking discovery for the five-time Grammy and 20-time Juno Award-winning musician, who after first rescheduling and then cancelling her Courage world tour, which was scheduled for 2023, took some time off public life to focus on managing the symptoms of an illness that has no cure.
WATCH | Celine Dion talks about how SPS affects her voice: 
Celine Dion talks about how tight-lipped syndrome affects her voice
Celine Dion told CBC chief correspondent Adrienne Arsenault that stiff-person syndrome has caused her to lose control of her voice, and that several experts have been unable to figure out what's going on.
“The cramps get worse, the cramps get worse.”
The interview marks the “My Heart Will Go On” singer's comeback and comes ahead of the June 25 release of “I Am: Celine Dion,” a documentary detailing her life and health struggles, as well as a belated explanation and apology she feels she owes her fans.
Although it's only been two years since Dion publicly announced her SPS diagnosis, she told CBC that she noticed her voice was starting to become hoarse a few years ago.
“At first, it was all light,” she said, explaining that it was during her 2008 Taking Chances World Tour that she first lost control of the pitch of her voice, with her tone sometimes soaring, almost like a yodel.
Those shows went well — the symptoms were mild and dismissed as a possible cold — but instead of getting better, things began to get worse quickly.
“As the weeks, months, and years passed, the symptoms became more frequent and worse every day,” she explains. “My body became stiffer, less flexible, and I experienced more spasms and cramps.”
Dion (left) shakes hands with Arceneaux in Las Vegas on May 21. (Dennis Trascellero)
Over the next 15 years, she says, her condition worsened, doctors were stumped, she resorted to makeshift workarounds and family obligations and tragedies left her with no time to catch her breath.
As the muscle spasms, stiffness and pain typical of SPS worsened, Dion and her team devised strategies to mask the effects.
They lowered the key of certain songs and dropped others, and she adjusted her singing, she says: Reaching the heights that once came easily now required more effort and a more nasal voice rather than the relaxed, powerful voice that was her trademark.
“It took courage”
During that time she saw many specialists, including an ear, nose and throat specialist, who examined her vocal cords and found no lymph nodes or polyps, and sent her home.
“I went to ear, nose and throat doctors all over the world,” she says, “I went to as many ear, nose and throat doctors as I did for as many shows. And they couldn't see anything. There was nothing.”
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At the same time, she was caring for her three sons and her husband, René Angélil, a singer himself, who was first diagnosed with throat cancer in 1998. He died in 2016 after several recurrences. Their twin sons, now 13 years old, are equipped with panic buttons and trained on what to do if their mother had a medical emergency.
And all the while, she continued to perform.
“I had to be very brave, more than clever. That's the way I did it,” she says.
WATCH | Celine Dion: Full interview with CBC News Chief Reporter Adrienne Arsenault: 
Celine Dion: I Sing Again
In this deeply personal, candid and revealing interview brought to you exclusively in Canadian English by The National team, Celine Dion opens up to CBC News chief correspondent Adrienne Arsenault about her struggles with a rigid personality, losing the voice that guided her life, and her determination to return to performing.
But eventually it became too much to hide: She had seizures triggered by crowds, lights, noise and even strong positive emotions – all essential elements of a Celine Dion concert.
That led to what she calls “years of lying,” with her shows postponed or canceled for everything from tonsillitis to sinusitis.
Then, finally, she announced that she had been diagnosed with Stiff Person Syndrome.
Learning a name for the disease that has plagued her for nearly two decades was, in a way, a relief, an escape from the “black hole” of unknown diagnosis that constantly weighed on her mind. “Living in the dark is worse than dying,” she said.
WATCH | Celine Dion vows to 'sing again': 
Celine Dion says she'll “sing again”
Celine Dion is determined to sing again. In an exclusive Canadian English interview, she speaks to CBC chief correspondent Adrienne Arsenault about her battle with the disease that's slowly eating away at her voice, and the fans who support her drive to one day return to the stage.
Bright prospects
But it was also sadness, the realization that she would live with the disease for the rest of her life, coupled with the dreaded question of whether she would ever sing professionally again.
But she told CBC her outlook is now brighter, with constant rehabilitation, medication adjustments slowly helping her manage her illness, and a mantra that keeps her going: “I'll sing again. I'm sure of it.”
This interview and upcoming documentary, she says, is her way of making that declaration — not just to herself, but to the fans who've invited her to sing with her.
“I hand over the microphone because they are a part of me. I was 12 when I met them. I miss them maybe more than singing itself,” she says.
“I need everyone to know that I'm alive… I want to get back on stage and I want to know if that's possible. I need everyone to know that I love you and I miss you all.”
Celine Dion's full conversation with CBC News will be available on Gem and YouTube and will air on The National Thursday night and on CBC Television Friday night at 8pm ET.
