Celine Dion disclosed in December 2022 that she had been diagnosed with Stiff Person Syndrome -- here's what she's said since.
In December 2022, Céline Dion revealed that -- after months of struggling with heath issues, including muscle spasms and stiffness -- she had officially been diagnosed with Stiff Person Syndrome (SPS), a rare autoimmune disorder.
According to the Mayo Clinic, Stiff Person Syndrome is "a rare disorder of motor function characterized by involuntary stiffness of axial muscles and superimposed painful muscle spasms, which are often induced by startle or emotional stimuli."
Since her announcement, Dion has been open with fans about how the condition has affected her life and career -- and effusive in her thanks for their support every step of the way.
She was forced to cancel her Courage World Tour, which restarted in 2022 after being paused due to COVID, but she has made several public appearances in recent months, including a surprise onstage moment at the 2024 GRAMMYs and several trips to hockey games with her sons.
Now, as she prepares to share even more about her recent struggles in a new documentary, I Am: Celine Dion -- which drops June 25 on Prime Video -- ET is looking back at everything Dion has said so far about her battle with Stiff Person Syndrome and her hopes for her health and career in the future.
April 2022 - First Signs
Dion first disclosed that she was battling health issues in January 2022, when she was forced to cancel the remaining North American dates of her Courage World Tour due to a slow recovery from "severe and persistent muscle spasms."
"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 said at the time. "I can't wait to be back onstage again."
Her issues persisted, however, and in April 2022, in an emotional message to fans, she announced more cancellations and postponements.
The entertainer admitted that figuring out her health was "going very slow, and it’s very frustrating for me. 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."
December 2022 - Official Announcement
On Dec. 8, 2022, the singer was ready to share more about her ongoing health issues, officially announcing her diagnosis.
"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 shared in an Instagram video. "Recently I've been diagnosed with a rare neurological disorder called the Stiff Person Syndrome, which affects something like one in a million people."
"While we're still learning about this rare condition, we now know this is what’s been causing all of the spasms that I've been having,” she explained. "Unfortunately these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk, and not allowing me to use my vocal cords to sing the way I’m used to."
Dion teared up as she announced the cancellation of European tour dates, noting that she was doing everything in her power to be able to perform again.
"All I know is singing. It’s what I’ve done all my life and it’s what I love to do the most. I miss you so much. I miss seeing all of you, being on the stage, performing for you," she continued. "I always give 100 percent when I do my shows, but my condition is not allowing me to give you that right now. For me to reach you again, I have no choice but to concentrate on my health at this moment. And I have hope that I’m on the road to recovery. This is my focus and I’m doing everything that I can to recuperate."
May 2023 - Total Cancellation
By May 2023, Dion had to admit to fans that her health was going to prevent her from going onstage for the foreseeable future, as she announced the cancellation of the remaining 42 shows on her Courage World Tour.
"I'm so sorry to disappoint all of you once again," the singer said in a statement. "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. I want you all to know, I'm not giving up... and I can't wait to see you again."
October 2023 - Hockey With the Boys
Dion made her first public appearance in nearly four years when she attended an NHL game between the Vegas Golden Knights and her hometown team, the Montreal Canadiens, on Oct. 31, 2023.
Not only that, but the singer brought along her three sons -- 22-year-old René-Charles and 13-year-old twins Eddy and Nelson -- and posed for a rare family photo as they greeted Canadiens players and staff in the locker room after the game.
"My boys and I had such a fun time visiting with the Montreal Canadiens after their hockey game with Vegas Golden Knights in Las Vegas Monday night," Dion captioned the post. "They played so well, what a game!! Thank you for meeting us after the game, guys! That was memorable for all of us. Have a great season! - Celine xx…"
January 2024 - Documenting Her Battle
In January 2024, Amazon MGM Studios announced that they had acquired worldwide rights to a feature-length documentary about Dion's ongoing health battle, helmed by Oscar-nominated filmmaker Irene Taylor.
According to the film's official synopsis, I Am: Celine Dion is "an intimate exploration that takes viewers on a journey inside the 55-year-old's past and present as she reveals her battle with Stiff Person Syndrome (SPS) and the lengths she has gone to continue performing for her beloved and loyal fans."
From visiting her couture touring wardrobe and personal effects to spending time in the recording studio, the documentary captures a global megastar's never-before-seen private life. "An emotional, energetic, and poetic love letter to music, I Am: Celine Dion captures more than a year of filming as the legendary singer navigates her journey toward living an open and authentic life amidst illness," the description reads.
"This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me," Dion said in a press release for the doc. "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. 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."
February 2024 - GRAMMYs Gold
Dion made a triumphant return to the public eye -- for the first time since November 2023 -- when she made a surprise appearance at the 2024 GRAMMY Awards to present the Album of the Year award, which went to Taylor Swift's Midnights. Dion graced the stage with eldest son René-Charles.
Dion received huge applause from the crowd and grew emotional in response to the warm reception, saying, "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."
And while the diva looked as elegant as ever onstage, she wowed fans around the world while backstage when the Queen of Pop shared her angelic voice during a singalong with GRAMMY-nominated songwriter Sonyaé.
March 2024 - A Promise to Family and Fans
On March 15, 2024, Dion celebrated International Stiff Person Syndrome Awareness Day with an inspirational Instagram post in which she vowed "to one day get back onto the stage and to live as normal of a life as possible."
"Trying to overcome this autoimmune disorder has been one of the hardest experiences of my life," she continued, "but I remain determined to one day get back onto the stage and to live as normal of a life as possible. I am deeply grateful for the love and support from my kids, family, team and all of you!"
Expressing gratitude for the unwavering support she has received, Dion extended her encouragement to others battling SPS around the world. "I want you to know you can do it! We can do it!" she exclaimed, echoing a sentiment of solidarity and strength.
April 2024 - Cover Girl
In April 2024, Dion was announced as the May cover star for Vogue France, offering a message of positivity amid her ongoing health battle.
"I'm honored to be doing a photo shoot for Vogue France. I'm very proud that, at 55, I've been asked to reveal my beauty," Dion said in an Instagram caption on her stunning cover shoot. "But what is beauty? Beauty is you, it's me, it's what's inside, it's our dreams, it’s today. Today, I'm a woman who is feeling strong and positive about the future. One day at a time."
In the interview, she opened up about why she made the decision to document her recent struggles in the upcoming film.
"I wanted to do it as a documentary because it's not a quick thing, and there is no quick fix to what I've gone through," Dion explained. "It's not just about vocal exercising and doing Pilates. It's rehabilitation physically and vocally, emotionally and spiritually-- the whole shebang. And I want this story to be told in a classy way. I respect my fans and myself enough for them to know the full truth."
May 2024 - I Am: Celine Dion
The first trailer for I Am: Celine Dion was released on May 23, 2024, and showed the singer's tearful announcement, as well as behind-the-scenes moments like her return to the recording studio, a scary 9-1-1 call and the painful decision to cancel her tour.
"It's not hard to do a show," Dion says in the trailer, over footage of her taking medicine and sitting in rehearsals. "It's hard to cancel a show. I'm working hard every day, but I have to admit it's been a struggle. I miss it so much."
"I just thought, if I could run or walk, if I could walk or crawl..." she continues through tears, but ends the clip on an ever-optimistic note: "I won't stop."
June 2024 - Opening Up
Prior to the documentary premiere, Dion sat down with Today's Hoda Kotb for an interview about her condition, getting candid on camera about the trials she's faced since her diagnosis.
The singer shared that, for her, Stiff Person Syndrome first presented itself in her throat -- locking up the muscles in a way that made it feel "like somebody is strangling you" when she tried to sing. It has also caused spasms in her abdomen, spine, ribs and limbs, with Dion noting that the ailment can manifest itself by locking her limbs in certain positions, for example, when cooking or pointing her toes.
The spasms have even gotten so bad, on occasion, that the singer has suffered from broken ribs. But perhaps an even greater pain for the singer, came from keeping her condition a secret. Dion told Kotb she felt she was "lying to the people who got me where I am today," adding that there came a time when "I could not do it anymore."
"I should have stopped, take the time to figure it out," she lamented. "I had to raise my kids. I had to hide. I had to try to be a hero. Feeling my body leaving me, holding onto my own dreams. And the lying for me was - the burden was like too much."
Dion's full interview with Kotb will air June 11 at 10 p.m. PT/ET. I Am: Celine Dion debuts June 25 on Prime Video.
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