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Céline Dion has been honest about her struggles with her health since being diagnosed with stiff-person syndrome in August 2022.
The “My Heart Will Go On” singer first revealed her diagnosis in December 2022 in an emotional video on Instagram, adding that she would have to postpone her tour originally scheduled for the spring of 2023 to 2024.
"I've been dealing with problems with my health for a long time, and it's been really difficult for me to face these challenges and to talk about everything that I've been going through," Dion wrote in the caption of the post. "It hurts me to tell you that I won't be ready to restart my tour in Europe in February."
Stiff-person syndrome is a rare neurological disease that affects one in a million people, marked by symptoms including "hyper-rigidity, debilitating pain, chronic anxiety," and muscle spasms "so violent they can dislocate joints and even break bones,” per the Stiff Person Syndrome Foundation.
Now, Dion is opening up about her experience with the illness in Prime Video’s I Am: Céline Dion, which will be released on June 25, 2024. In a June 2024 cover story for PEOPLE, Dion shared how her three sons — René-Charles, Nelson and Eddy — fuel her to keep fighting, especially after having lost their father, René Angélil, in 2016.
I barely could walk at one point, and I was missing very much living. My kids started to notice. I was like, 'OK, they already lost a parent. I don't want them to be scared,' " she said. "I let them know, 'You lost your dad, [but] mom has a condition and it's different. I'm not going to die. It's something that I'm going to learn to live with.’ "
From when she was first diagnosed to how she’s coped with her illness so far, here’s a complete timeline of Céline Dion’s health journey.
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Celine Dion performs on the opening night of her new world tour "Courage" on September 18, 2019.
Dion announced the first of her performance cancellations as early as October 2021, cancelling 21 headlining performances in November and between January and February 2022. She also pushed back the Nov. 5 opening date of her new Las Vegas show due to “unforeseen medical symptoms” including "severe and persistent muscle spasms.”
"I'm heartbroken by this," Dion said in a statement. "My team and I have been working on our new show for the past eight months, and to not be able to open this November saddens me beyond words."
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Celine Dion rehearses for the 2019 Macy's Thanksgiving Day Parade.
A few months later, Dion also canceled the remainder of the North American leg of her Courage World Tour due to “severe and persistent muscle spasms” that she was again being treated for.
"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," she wrote in a statement. "There's a lot of organizing and preparation that goes into our shows, and so we have to make decisions today which will affect the plans two months down the road."
Though she originally planned on resuming her tour in Europe in May, in April she revealed in a since-deleted video on Instagram that she would be postponing the tour dates as she continued to receive treatment.
"The good news is that I'm doing a little bit better but it's very going very slow, and it's very frustrating for me," she said. "You know I'm getting treatment from my doctors, taking medication but I'm still experiencing some spasms and it's taking a lot longer for me to recover than I had hoped."
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Celine Dion attends the Valentino Haute Couture Fall/Winter 2019 2020 on July 03, 2019 in Paris, France.
Dion told PEOPLE in June 2024 that she was officially diagnosed with SPS in August 2022 and immediately began a rigorous treatment plan involving medication, immune therapy, vocal therapy and intense physical rehabilitation five days a week.
"The good thing that's on my side is that I love doing all these things," she said.
Dr. Amanda Piquet, the physician who diagnosed Dion, told PEOPLE the singer's treatments alone are a "full-time job,” adding that she is “incredibly motivated and determined.”
"We don't have FDA-approved therapies for this disease. While we use these treatments, everything is off-label," Piquet said of SPS, which currently has no cure. "I've certainly had patients that have clear improvements with these therapies, but we need clinical trials and research to tell us what truly is best."
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Celine Dion attends the premiere of Disney's "Beauty And The Beast" on March 2, 2017 in Los Angeles, California.
A few months after being diagnosed, Dion shared the news with the world in an emotional video on Instagram.
"Recently, I've been diagnosed with a very rare neurological condition called stiff-person syndrome, which affects something like one in a million people," she said in her video. "While we're still learning about this rare condition, we now know that this is what has been causing all of the spasms that I've been having."
She added that the condition was causing difficulties in her day-to-day life, including how she walked and her vocal cord use, prohibiting her from singing “the way I'm used to,” she said.
"I'm working hard with my sports medicine therapist every day to build back my strength and my ability to perform again," Dion added. "But I have to admit, it's been a struggle."
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Celine Dion is seen on November 14, 2019 in New York City.
When she announced her diagnosis, Dion originally postponed more shows to 2024 while also canceling some slated for the summer of 2023. However, a few months later, Dion confirmed she was canceling all her scheduled tour dates through April 2024.
"I'm so sorry to disappoint all of you once again... and even though it breaks my heart, it's best that we cancel everything until I’m really ready to be back on stage... I'm not giving up… and I can't wait to see you again! – Celine xx," the singer wrote on X, formerly Twitter, at the time of the announcement.
Celine Dion/ Instagram
Celine Dion and her 3 sons go to a hockey game together
Dion attended a hockey game between the Vegas Golden Knights and the Montreal Canadiens in Las Vegas, marking her first public appearance in nearly four years. She was photographed stepping into the locker room to greet her hometown team and was spotted shaking hands with team members alongside her three sons.
Chantal Machabée, vice president of hockey communications for the Canadiens, told PEOPLE that Dion even sang a “few notes” for the team and was in high spirits during the outing.
"She's been through a lot, and to see her like this and smiling and being so happy...it's amazing," Machabée said of Dion. "I know she has good days and not so good days, but this was a very good day, and it was reassuring."
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Celine Dion. Taylor Swift, and Rene-Charles Angelil attend the 66th GRAMMY Awards on February 04, 2024 in Los Angeles, California.
A few months later, Dion made another rare public appearance when she presented Taylor Swift with the final award of the night at the 2024 Grammys. She came out on stage to a standing ovation from the crowd, accompanied by her eldest son.
??"Thank you all, I love you right back. When I say that I'm happy to be here, I really mean it from my heart," she said.
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Celine Dion performs onstage during the 2017 Billboard Music Awards on May 21, 2017 in Las Vegas, Nevada.
In an interview with Vogue France, the “All By Myself” singer admitted that she wasn’t sure when she’d be able to return to performing and touring.
"I can't answer that… Because for four years I've been saying to myself that I'm not going back, that I'm ready, that I'm not ready," Dion told the outlet. "As things stand, I can't stand here and say to you: 'Yes, in four months.' I don't know... My body will tell me. On the other hand, I don't just want to wait."
She added that she hopes with more research, there will be a cure for the disease but in the meantime, she was learning to “live with it.”
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Celine Dion is seen as she departs her hotel on March 08, 2020 in New York City.
Ahead of the release of her Prime Video documentary, Dion sat down with Hoda Kotb in her first televised interview since her diagnosis. She explained to the NBC News host that singing with SPS feels “like somebody is strangling you.”
“It’s like somebody is pushing your larynx/pharynx," she said in a preview of the conversation, raising her voice to demonstrate her point. "It was like talking like that, and you cannot go high or lower."
She elaborated further on the pain she experiences, detailing how the stiffness can sometimes make her feel locked in place.
"It feels like, if I point my feet, they will stay in [that position]," she explained. “Or, if I cook — because I love to cook — my fingers, my hands, will get in position. ... It’s cramping but it’s like in a position where you cannot unlock them."
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Celine Dion is seen outside Alexandre Vauthier show during Paris Fashion Week - Haute Couture Fall Winter 2019/2020 on July 02, 2019 in Paris, France.
In a cover story for PEOPLE, Dion revealed that while her SPS diagnosis was relatively recent, she had been experiencing symptoms that she had been brushing aside for as long as 17 years. She shared that through decades of writing and performing music and back-to-back tours as well as residencies, she was often pushing back the pain from muscle spasms in her throat and feet, difficulty breathing and walking and even “crisis” episodes during which she experienced excruciating pain as her body became stiff.
"I was going down, down, down. It took my whole life,” Dion said. “But it's like if my kids are rollerblading, for example, and one of their ankles is hurting. They don't want to tell me because I'm going to say, 'Well, take a break from rollerblading.' "
She added, "I didn't want to stop. I wanted to stay onstage. I wanted to be brave instead of smart. That was wrong."
Dion was advised to take prescription medications like the muscle relaxer Valium. While she initially started out with a small dose of two milligrams, she continued to up the dosage as she was still in pain until, at one point, she reached 90 milligrams to power through a performance.
"It could have been fatal. I did not question the level because I don't know medicine. I thought it was going to be OK. It worked for a few days, for a few weeks, and then it doesn't work anymore," she said. "I did not understand that I could have gone to bed and stopped breathing. And you learn — you learn through your mistakes."
