Celine Dion lived with a secret until it threatened her career and life. Almost two years after publicly sharing her diagnosis with a rare autoimmune neurological disorder, the superstar opened up about her agonizing journey.
Singer Celine Dion was diagnosed with Stiff Person Syndrome not long before she shared it with the world in 2022, but she’s lived with the debilitating symptoms for decades.
From muscle spasms so intense it broke her ribs, to the emotional burden she’s carried for years, Celine finally felt ready to share her experience.
Celine Dion performs onstage during “Stayin’ Alive: A GRAMMY Salute To The Music Of The Bee Gees” on February 14, 2017, in Los Angeles, California | Source: Getty Images
Celine Dion’s Diagnosis
It wasn’t until early December 2022 that Celine finally felt ready to share the reason behind her ongoing health issues publicly. In an emotional video that also announced the rescheduling of her 2023 shows, the legendary singer shared that she’d recently been diagnosed with Stiff Person Syndrome.
During Celine’s 2008 “Taking Chances World Tour,” she experienced early symptoms that affected her voice. “It’s like somebody strangling you,” she explained about the spasms in her throat during a new interview.
It took doctors years to eliminate disease after disease before a diagnosis was finally reached. Since Stiff Person Syndrome is a progressive disorder, it started to affect Celine’s mobility and her quality of life.
Celine Dion talks about the start of symptoms that led to a diagnosis of Stiff Person Syndrome | Source: YouTube/TODAY
Why Celine Dion Didn’t Get Answers Initially
“We did not know what was going on. I didn’t take the time. I should have stopped, taken the time to figure it out,” she said. But she didn’t take the time. Her late husband, René Angélil was in a fight for his life with cancer, and she also had children to raise.
Celine Dion and husband René Angélil unveil her Bronze Star In Montreal, Canada, on September 26, 2002 | Source: Getty Images
Celine didn’t say anything about issues she couldn’t even put a name to at the time, but years later the situation had changed and she also had an official diagnosis.
“I had to hide. I had to try to be a hero. Feeling my body leaving me. Holding on to my own dreams, and lying for me was; the burden like was too much. Lying to the people who got me where I am today, I could not do it anymore,” she said.
Celine Dion and children Rene-Charles Angelil, Eddy Angelil and Nelson Angelil attend the State Funeral Service for Celine Dion’s Husband Rene Angelil at Notre-Dame Basilica on January 22, 2016, in Montreal, Canada | Source: Getty Images
Events That Led up to Celine Dion Sharing Her Diagnosis
When the remainder of the North American leg of her 2023 European “Courage World Tour” was officially canceled on January 15, 2022, due to “severe and persistent muscle spasms,” no one knew about the serious battle Celine was secretly fighting.
“I was really hoping that I’d be good to go by now, but I suppose I just have to be more patient and follow the regimen that my doctors are prescribing,” her statement read.
In April 2022, the seriousness of Celine’s ongoing health issues became even more evident when it was announced that the dates for her European “Courage World Tour” would be rescheduled.
“I am doing a little bit better…but I’m still experiencing some spasms. I need to be in top shape when I’m on stage. I honestly can’t wait, but I’m just not there yet… I’m doing my very best to get back to the level that I need to be so that I can give 100% at my shows because that’s what you deserve,” Celine lamented.
Celine Dion’s Road to Better Quality of Life
Dion may have largely disappeared from the public eye amid her now intensified health issues, but in private, she is working hard on recovery and ultimately returning to the stage.
“She’s doing everything to recover. She’s a strong woman,” said her sister, Claudette, in 2023. However, she laments being unable to “alleviate her pain” when spasms grip Celine’s body.
“There are spasms – they’re impossible to control. You know how people often jump up in the night because of a cramp in the leg or the calf? It’s a bit like that, but in all muscles,” she explained.
Irene Taylor, filmmaker of Celine’s recently premiered documentary, “I Am: Celine Dion,” saw what the singer went through firsthand.
“Her body was enduring something that was unimaginable, and I wasn’t sure if she was aware of it, and I wasn’t sure if she was going to survive it,” she said of an incident that had her particularly worried.
Celine Dion and film maker Irene Taylor discuss her documenary in an interview with Hoda Kobt on “Today” | Source: YouTube/TODAY
A Step Forward for Stiff Person Syndrome Research
Even though Celine has experienced muscle spasms so strong it broke some of her ribs, her health has reportedly been turning a corner.
“Since the end of the documentary, there has been significant progress. People suffering from this disease can get back to things they loved doing prior to the onset of their symptoms. It takes time, and it takes a lot of treatment, working day by day to improve quality of life,” Dr. Amanda Piquet, who has been treating Celine with antibody treatment, medication, and physical therapy, said.
Dr. Amanda Piquet, the neurologist treating Céline Dion speaks about advancements in the field | Source: YouTube/TODAY
Celine Dion’s Determination to Return to What She Loves
Celine is also determined to do what it takes to get back on stage. “I’m going to go back onstage, even if I have to crawl. Even if I have to talk with my hands, I will. I will,” she declared.
Celine Dion discuss living with Stiff Person Syndrome | Source: YouTube/TODAY
While she won’t return to the detriment of her health, even if it means canceling shows in the future, Celine also won’t let the disorder, which causes stiffness in the limbs and torso and produces intense muscle spasms, control her life.
“I don’t want to be scared of myself and questioning my music, my songs. I don’t,” she elaborated. “Because music is a language. And it’s in everybody’s life.”
Celine Dion discuss how she copes with the symptoms of Stiff Person Syndrome | Source: YouTube/TODAY
While she says her voice is getting stronger, Celine Dion does worry whether fans will remember her after all this time, though she hopes for the opposite.
“I want you to come and see me again. I would like to invite you to sing with me again,” she added.
