Inside Céline Dion’s Health Journey With Stiff-Person Syndrome
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Céline Dion was in the middle of her Taking Chances World Tour—one of the pop star’s biggest ever, spanning 25 countries and drawing more than 3 million fans—in 2008 when she initially felt something wrong with her voice. With a visit to an ear, nose, and throat doctor revealing nothing, Dion continued performing. But it was hardly the last time her ill health would impact her singing.
Though “The Power of Love” singer was unaware, that concert experience was only the start of a prolonged battle with the neurological disorder stiff-person syndrome. It would be more than a decade until doctors finally diagnosed the five-time Grammy winner with SPS, a rare condition affecting about only one in every 1 million people according to a 2021 study in the journal Case Reports in Neurological Medicine.
Afflicted with painful spasms and muscle stiffness throughout her body, which altered her ability to sing and walk, Dion has had no choice but to halt her music career. Despite her dire prognosis, the singer remains adamant she hopes to eventually return to the stage. “I have this strength within me. I know that nothing is going to stop me,” she recently told Vogue France.
Dion began experiencing symptoms in 2008
The vocal spasms Dion experienced during that 2008 tour were some of her earliest signs of SPS, she recently told Vogue France. However, “[the doctors] looked at my [vocal cords] from every angle, and they said it was pristine,” she said.
Dion continued on with her shows and remained active on stage over the next few years, completing a residency in Las Vegas and additional tours. But behind the scenes, she had developed muscle stiffness that made it difficult to walk without holding onto things. Despite her worsening condition, Dion attempted to hide her symptoms amid husband René Angélil’s own treatment for a recurrence of throat cancer starting in 2014.
Watch I Am: Celine Dion, a chronicle of the singer’s career and health journey, on Amazon Prime Video
Angélil died in January 2016, leaving Dion to care for the couple’s three sons, then-14-year-old René-Charles and 5-year-old twins Nelson and Eddy. Now more than ever, she was determined to work and live as normal despite her mysterious symptoms. “I should have stopped, taken the time to figure it out,” she told Today. “I had to raise my kids. I had to hide. I had to try to be a hero. Feeling my body leaving me, holding on to my own dreams.”
The singer’s initial treatments were dangerous
The singer’s condition only worsened, dramatically affecting her ability to sing and go about her normal life. “It’s like somebody is strangling you,” Dion told Today, adding she has suffered broken ribs from spasms and experienced total immobilization of her hands and feet.
Still, Dion tried to continue performing. She was advised to take muscle-relaxing medications, including Valium. Starting off with a 2-milligram dose, she eventually increased it to as many as 90 milligrams—a potentially fatal amount—to make it through a concert. “I did not question the level, because I don’t know medicine. I thought it was going to be okay,” she told People. “It worked for a few days, for a few weeks, and then it doesn’t work anymore.”
Eventually, the situation became untenable. In October 2021, Dion postponed 21 performances scheduled over the next four months and delayed the opening of her new Las Vegas residency. But come January 2022, she canceled the rest of her North American tour because of severe muscle spasms.
Dion felt she’d been “lying” about her condition
Following years of what she called “playing hide-and-seek with myself” and downplaying her condition around friends and family, Dion resolved to prioritize her health following the start of the COVID-19 pandemic. She scheduled more frequent and detailed examinations to rule out possible causes of her symptoms.
Finally, in August 2022, Dion’s physician Dr. Amanda Piquet determined she had SPS, which is incurable but can be managed through medication and other treatment methods, according to Johns Hopkins Medicine.
Despite the shock of her diagnosis, the singer quickly felt she needed to be forthcoming. By December of that year, she decided to publicly reveal her condition in an emotional Instagram video.
“The burden was, like, too much. Lying to the people who got me where I am today, I could not do it anymore,” Dion recently told Today about her decision.
Her announcement and the media coverage surrounding it sparked a rise in awareness of SPS, nicknamed the “Céline effect.” Speaking to the Montreal Gazette in March 2023, Dr. Scott Newsome, director of the Johns Hopkins Stiff Person Syndrome Center in Baltimore, expressed hope Dion’s revelation could ultimately lead to more funding for SPS research.
Dion offers an even more intimate look into her health journey in the new documentary I Am: Celine Dion, which is now streaming on Amazon Prime Video. Director Irene Taylor filmed Dion at some of her most vulnerable moments, including a “crisis episode” in which muscles throughout her body stiffen with severe pain.
Today, Dion is committed to focusing on her health
This April, Dion told Vogue France she is still learning to live with the condition. In addition to taking medication, the singer undergoes physical, vocal, and athletic therapy five days each week. Her physician, Dr. Piquet, has described the treatment plan as a “full-time job.”
“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,” Dion said.
Dion has felt healthy enough to make a couple of notable public appearances. The singer was spotted at a Boston Bruins NHL game in March, dancing to a Bon Jovi song from a luxury box and even visiting the team’s locker room. She also surprised viewers and attendees at February’s Grammy Awards by presenting the Album of the Year trophy to pop star Taylor Swift. Most recently, the singer attended the June 17 premiere of I Am: Celine Dion in New York City.
Although she’s still unsure if she’ll ever tour again, Dion has continued to express optimism. Marking International Stiff-Person Syndrome Awareness Day on March 15, she shared a (now-deleted) photo of herself and her three sons to Instagram. In the caption, she wrote, “I remain determined to one day get back onto the stage and to live as normal of a life as possible.”
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