Celine Dion Shares She Nearly Died Amid Battle With Stiff-Person Syndrome

Céline Dion is opening up on her health journey. 

Nearly two years after the "My Heart Will Go On" singer shared her diagnosis with stiff-person syndrome, her battle is being explored in the documentary I Am: Celine Dion Prime Video documentary, set to release next month. And among aspects of her health journey she's opening up about is how it nearly cost her her life.  

"Céline Dion at some point—she is now much better—but at some point she almost died," Hoda Kotb, whose interview with the singer airs ahead of the documentary's release, explained on Today May 23. "It was so jarring to me and moving—I couldn't believe what they were able to capture in that documentary."

While fans will have to wait another month for Céline's full story, the documentary trailer, also released May 23, teases what is to come. 

"I have been diagnosed with a very rare neurological disorder," she says in the trailer. "And I wasn't ready to say anything before. But I'm ready now."

Amid clips of Céline's visits with medical professionals, mixed in with nostalgic videos of her performing earlier in her career, the "I'm Alive" singer, who recently noted she is working like an athlete to maintain her health, gives crushing details of her affliction in a voice over—and notes the hardest part of it all is her inability to perform. 

"It's not hard to do a show now, it's hard to cancel a show," she says. "I'm working hard every day, but I have to admit—it's been a struggle. I miss it so much. The people. I miss them. If I can't run, I'll walk. If I can't walk. I'll crawl. I won't stop."

Throughout her health journey, Céline's goal of returning to music appears to motivate her as she looks back at her past gigs, reflecting, "I think we did create our own magic."

And amid her difficult health battle, the five-time Grammy winner makes it clear she does not let her rare diagnosis define her. 

"I see my life, and I love every piece of it," she continues, seemingly going on to describe her life through a metaphor. "When a girl loves her shoes, she always makes them fit—from six to ten—I love them. Give it to me. Here we go."

While Céline—who shares sons René-Charles, 23, and twins Nelson and Eddy, 13 with her late husband René Angélil—has largely stayed out of the spotlight amid her health journey, she made a grand return to the music stage in February to present Taylor Swift with the 2024 Grammy for Album of the Year. 

"Thank you all," Céline, who was met with a standing ovation when she took the stage, escorted by René-Charles, she told the crowd. "I love you right back. When I say that I'm happy to be here, I really mean it from my heart."

Keep reading for a full timeline of Céline's health journey.

The COVID-19 pandemic had forced Céline Dion to press pause on her Courage World Tour in 2020 and she was looking forward to getting back on the road in 2022. But that spring the singer said she'd be postponing her return until February 2023 while she continued to deal with a lingering health issue.

A note on her website further explained that she'd been treated for "severe and persistent muscle spasms which are preventing her from performing, and her recovery is taking longer than she hoped."

Dion said in a statement, "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 percent at my shows because that's what you deserve."

Dion shared that she had been diagnosed with a "very rare" progressive neurological disorder called stiff-person syndrome, surely the first time that most people had ever heard of it.

"As you know, I've always been an open book," she said in an Instagram video. "I wasn't ready to say anything before, but I'm ready now. 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."

She suffered muscle spasms that affected "every aspect" of her daily life, Dion explained, making it difficult to walk sometimes and, saddest of all, it was going to be impossible for her to go back on tour as she'd been planning.

"I'm working hard with my sports medicine therapist every day to build back my strength and my ability to perform again," Dion said. "But I have to admit, it's been a struggle."

According to the National Institutes of Health, symptoms include stiff muscles in the torso, arms, and legs, and greater sensitivity to noise, touch, and emotional distress, all of which can trigger muscle spasms.

Who says you can't have some new Céline Dion music when you least expect it? 

She had previously recorded five songs for the rom-com Love Again, and the title track dropped ahead of the film's May 5 release. "I think it's a wonderful feel-good story, and I hope that people will like it, and like the new songs too," stated Dion, who also appeared as herself in the movie starring Priyanka Chopra Jonas and Sam Heughan.

Dion already had several signature movie tracks to her name—"Beauty and the Beast," "Because You Loved Me" and the Oscar-winning Titanic anthem "My Heart Will Go On"—but somehow she had never been in a movie before. (You can check out her debut in this one on Netflix.)

After a three-month delay, Dion canceled her Courage World Tour entirely through April 2024.

"I'm so sorry to disappoint all of you once again," she wrote on Instagram. "I'm working really hard to build back my strength, but touring can be very difficult even when you're 100 percent. It's not fair to you to keep postponing the shows, and even though it breaks my heart, it's best that we cancel everything now until I'm really ready to be back on stage again."

Dion was seen out in a very public place for the first time since she shared her diagnosis when she caught a Las Vegas Knights hockey game at T-Mobile Arena with her and late husband René Angélil's three sons, René-Charles, 23, and twins Eddy and Nelson, 13.

The Montreal Canadiens shared footage of the family's meet-and-greet in the visiting team's locker room, Dion telling coach Martin St. Louis (per an English translation) that it had been "an incredible night." She even gave the players a pep talk, advising, "Just stay healthy, strong...do what you do best."

But better yet, according to Canadiens executive Chantal Machabée, their VIP guest sang "a few notes" for them and it was "an incredible moment."

"She's been through a lot, and to see her like this and smiling and being so happy...it's amazing," the team's VP of hockey communications told People. "I know she has good days and not so good days, but this was a very good day, and it was reassuring."

Claudette Dion gave a rather dire-sounding update on her sister's health battle, telling 7 Jours (translated from the original French) that the singer—who's the youngest of 14 siblings—didn't have control over her muscles.

"What breaks my heart is that she's always been disciplined," Dion's big sister said. "She's always worked hard. Our mother always told her, 'You're going to do it well, you're going to do it properly.'"

The former judge on Quebec's L'Étoile des aînés (a competition for singers 65 and older) said it was her and Dion's dream that the singer would be able to return to the stage. "In what capacity?" she added. "I don't know."

The most promising sign yet that a new day had begun: Dion, who had understandably chosen to take a step back from public life while she battled her condition, was getting ready to give a raw look at what she was going through. 

Amazon announced the upcoming documentary I Am: Céline Dion, directed by Irene Taylor, would reveal the lengths Dion had been going to in hopes she could go back to doing what she loved.

"As the road to resuming my performing career continues, I have realized how much I have missed it, of being able to see my fans," Dion said in a statement, explaining why once more she was opening the door. "During this absence, I decided I wanted to document this part of my life, to try to raise awareness of this little-known condition, to help others who share this diagnosis."

The 2024 Grammys may have ended with a few more people believing in the power of love.

As soon as Dion was announced as the night's final presenter (after social media got wind of her presence elsewhere in the building, but still), the audience was on its feet.

The five-time Grammy winner may not have been ready for a spotlight performance on music's biggest night just yet, but she did sing a few bars with Sonyaé Elise backstage, the "Collide" artist sharing the moment on Instagram afterward amid other highlights from her "ICONIC night."

Dion and Taylor Swift also shared an off-stage hug, silencing the immediate uproar over Swift seemingly not paying proper homage to the elder legend onstage when Dion presented her with Album of the Year for Midnights. Not wanting to be an anti-hero on her history-making night, Swift posed for pics with Dion and René-Charles, who had sweetly escorted his mom to the microphone.

Dion also shared some highlights from the icons-only portion of the evening, including photos with Stevie Wonder and Oprah Winfrey.

Celebrating the momentous night with Dion was her longtime stylist Law Roach, who dressed the star in a flowy Valentino dress and striking overcoat, with Tiffany & Co. diamonds upping the sparkle factor.

"This makes me so much Joy!" he captioned a next-day Instagram snap with Dion. "Not just to dress my Queen again but the fact that she's HEALTHY AND HAPPY! The UNIVERSE always PROTECTS and PROVIDES."

After a March trip to Boston, where she watched the Bruins take on the New York Rangers at TD Garden, Dion gave an update on her health to Vogue France.

She was still learning to live with stiff-person syndrom, she shared in the article published April 22, but was working her butt off with athletic, physical and vocal therapy five days a week to not let it defeat her.

"The way I see it, I have two choices," Dion said. "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."