Via Instagram, singer Celine Dion is speaking openly about her journey as someone with the rare neurological condition stiff person syndrome (SPS), an incurable disorder which causes uncontrollable muscle spasms and pain. The 55-year-old Canadian queen of power ballads also said she’s hopeful she can find a way to perform for audiences again, following an onstage appearance last month.
The last few years have been private ones for the “My Heart Will Go On” singer, who announced in late 2022 that she’d been diagnosed with SPS after “dealing with problems with my health for a long time.” The condition had been “causing difficulties when I walk” and was “not allowing me to use my vocal cords to sing the way I’m used to,” the singer said, a challenge that forced her to cancel performances she had planned in 2023.
Since then, she’s been spotted only briefly—at an NHL game last November, and in a surprise role as a presenter at the Grammys last month. The latter appearance was especially unanticipated by fans, as just a few months before, Dion’s sister, Claudette Dion, said “She doesn’t have control over her muscles.”
“It’s true that in both our dreams and hers, the goal is to return to the stage,” Claudette said in December 2023. “In what capacity? I don’t know.”
Dion seemed in good spirits at the Grammys in February, when she was greeted with a standing ovation. “When I say that I’m happy to be here, I really mean it from my heart,” Dion said, before awarding Taylor Swift with the trophy for Album of the Year.
In an Instagram post published late Friday night, Dion noted, “Today the world recognizes International SPS Awareness Day,” held annually on March 15.
“As many of you know, in the fall of 2022, I was diagnosed with Stiff Person Syndrome (SPS),” the singer wrote in the caption to a photo of her with her children with her late husband, René Angélil. In the image, she stands in front of a backdrop emblazoned with the logo for go-kart company K1, while sons René-Charles Angélil and twins Nelson and Eddy Angélil appear to hold trophies from an unspecified event.
“Trying to overcome this autoimmune disorder has been one of the hardest experiences of my life,” Dion wrote. “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,” Dion wrote in conclusion. “I want to send my encouragement and support to all those around the world that have been affected by SPS. I want you to know you can do it! We can do it!”
Those eager for more from Dion won’t have to wait until she resumes her tour, it appears. I Am: Celine Dion, a documentary billed as depicting Dion’s “never-before-seen private life” as she “navigates her journey toward living an open and authentic life amidst illness,” is expected to land on Prime Video at some point in coming months.
Included in the film, which was directed by award-winning documentarian Irene Taylor, is reportedly a year’s worth of footage that includes a visit by Dion to her “couture touring wardrobe and personal effects” as well as scenes of the singer in the recording studio.