Céline Dion, 58, revealed she experienced symptoms of Stiff Person Syndrome for 17 years before receiving her formal diagnosis in 2022.
The Canadian singer told Harper’s Bazaar that the progressive condition slowly took hold while she powered through decades of touring and residencies, often masking the muscle spasms, breathing difficulties and balance issues that would eventually force her offstage. She said she didn’t want to stop performing and chose to be “brave instead of smart,” a decision she now recognizes was wrong.
Dion was diagnosed with the rare neurological disorder in August 2022 and went public that December in an emotional video posted to Instagram. “I’ve been dealing with problems with my health for a long time and its been really difficult for me to face my challenges and to talk about everything that I’ve been going through,” she said in the clip. “Recently I’ve been diagnosed with a very rare neurological disorder called the Stiff-Person Syndrome which affects one in a million people.”
She continued in the same video: “While we’re still learning about this rare condition, we now know this is what’s been causing all the spasms I’ve been having. 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 told Harper’s Bazaar that she dislikes calling SPS a “disease” because of the reaction it provokes. She scrunched up her nose while explaining that the word makes people “go like this,” then quipped a line from Home Alone: “‘Kevin, you’re such a disease.'”
The condition, which affects roughly one in a million people according to the Cleveland Clinic, causes muscle stiffness, rigidity and painful spasms that typically develop between ages 30 and 40. Symptoms can remain stable for years or slowly worsen, eventually limiting a person’s ability to perform daily activities.
In preparation for her return to the stage, Dion has committed to an intense physical regimen. She is doing 90-minute Pilates sessions three times a week and ballet classes twice weekly, Harper’s Bazaar reported. Her physician, Dr. Amanda Piquet, said in June 2024 that Dion’s treatments alone amount to a “full-time job” and described her as “incredibly motivated and determined.”
Dion said that her three sons — René-Charles, Nelson and Eddy — fuel her determination to keep fighting, especially after losing their father, René Angélil, to throat cancer 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.'”
In the viral moment that marked her first performance since stepping back from music, Dion sang from the base of the Eiffel Tower at the 2024 Paris Olympics opening ceremony, delivering a rendition of Édith Piaf’s “Hymne à l’Amour.” The appearance came after she suspended her entire 2023 tour, telling fans at the time, “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.”
Dion credits her devoted fans with giving her the life she leads and the opportunity to document her health journey in her 2024 Prime Video documentary, I Am: Céline Dion. “They paid for tickets,” she told Harper’s Bazaar. “They bought my records. They gave me that luxury. So the least I can do is tell them that I’m alive.”
On March 30, her 58th birthday, Dion announced on Instagram that she would perform 10 nights at the 40,000-capacity Paris La Défense Arena beginning in September, with another 10 shows scheduled for May 2027. “I’m so happy. I’m so ready to do this. I’m feeling good, I’m strong. I’m feeling excited,” she said in the post. “I can’t wait to see you again.”
Dion’s first Paris show is scheduled for September 12 at La Défense Arena.