When Céline Dion announced in December 2022 that she had been diagnosed with Stiff Person Syndrome, she couldn’t give fans much information other than noting her European tours were canceled.
Nearly a year and a half later, the singer is sharing details about her arduous recovery, optimistic outlook, and why she originally blamed herself for her diagnosis.
“I haven’t beat the disease, as it’s still within me and always will be,” Dion, 56, told Vogue France. “I hope that we’ll find a miracle, a way to cure it with scientific research, but for now I have to learn to live with it. So that’s me, now with Stiff Person Syndrome.”
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Céline Dion shared her Stiff Person Syndrome diagnosis with the world in December 2022. (Edward Berthelot/GC Images/Getty Images)
“Five days a week I undergo athletic, physical and vocal therapy. I work on my toes, my knees, my calves, my fingers, my singing, my voice,” she explained. “I have to learn to live with it now and stop questioning myself. At the beginning, I would ask myself: why me? How did this happen? What have I done? Is this my fault?”
“Life doesn’t give you any answers,” she continued. “You just have to live it! I have this illness for some unknown reason. The way I see it, I have two choices. 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.”
Céline Dion says she’s training as rigorously as an athlete amid her Stiff Person Syndrome diagnosis. (Brian Rasic/WireImage/Getty Images)
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“I’ve chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best I can be. My goal is to see the Eiffel Tower again!” the 6-time Grammy Award-winner declared.
Despite her resiliency, Dion isn’t willing to give a definitive answer about returning to the stage. She says she “can’t answer” if she’ll be able to perform or tour again.
Céline Dion delighted fans by making a surprise appearance at the 66th Annual Grammy Awards in February 2024. (Valerie Macon/AFP via Getty Images)
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“For four years I’ve been saying to myself that I’m not going back, that I’m ready, that I’m not ready,” she revealed, indicating her health had been declining before her announcement in late 2022. “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. It’s morally hard to live from day to day. It’s hard, I’m working very hard and tomorrow will be even harder. Tomorrow is another day. But there’s one thing that will never stop, and that’s the will. It’s the passion. It’s the dream. It’s determination.”
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It’s also the support of her family and fans. The “My Heart Will Go On” singer says they have kept her afloat during this difficult time. “Above all, the love of my family and my children, the love of the fans too, and the support of my team,” the mother of three said of those helping her most.
“People who suffer from SPS may not be lucky enough or have the means to have good doctors and good treatments. I have those means, and this is a gift. What’s more, I have this strength within me. I know that nothing is going to stop me.”
Céline Dion says the support of family, fans and her team have been paramount during her battle with Stiff Person Syndrome. (Alice Chiche/AFP via Getty Images)
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SPS is defined by the Cleveland Clinic as “a rare autoimmune movement disorder that affects the central nervous system (the brain and spinal cord). People with this condition first experience a stiffening of the muscles of their trunk followed, over time, by the development of stiffness and rigidity in the legs and other muscles in the body.”