Celine Dion on battle with stiff-person syndrome: ‘It’s still within me and always will be’

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Celine Dion opened up about her battle with the autoimmune disease that has led to her taking a hiatus from touring, in a rare interview for the cover story of the May issue of Vogue France.

The 56-year-old was diagnosed with stiff-person syndrome in December 2022, an incurable condition that leads to fluctuating muscle rigidity and painful spasms.

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Dion said she is following an intensive regimen to manage the condition, including athletic, physical and vocal therapies, and she’s doing well, “but it’s a lot of work.”

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Dion said she hasn’t “beat the disease, as it’s still within me and always will be.”

Five days a week she undergoes various therapies, including working on her toes, knees, calves, fingers, singing and her voice. “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,” she said.

“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. You just have to live it! I have this illness for some unknown reason,” she added.

From her perspective, she said that she has two choices, train like an athlete to keep up her health or switch off and say “it’s over.”

“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” she said, adding that her goal is to see the Eiffel Tower again.

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Dion also said that the love of her family and fans and support she receives from her team keep her motivated.

“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.”

Still, she said she can’t answer when she’ll be back to touring again.

“My body will tell me,” she said. “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 the determination.”

Last August, Dion’s sister, Claudette, told Le Journal de Montréal, that Celine was “listening to the top researchers in the field of the rare disease,” but had yet to find a treatment that worked.

Claudette added that Celine was being cared for by their sister Linda, who has moved into Celine’s home alongside her three sons, René-Charles, Eddy and Nelson.

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“I honestly think that she mostly needs to rest. She always goes above and beyond, she always tries to be the best and top of her game,” said Claudette.

“At one point, your heart and your body are trying to tell you something. It’s important to listen to it,” she said.

Affecting one in a million people, SPS is still not very well understood. In addition to muscle rigidity it also leads to a heightened sensitivity to stimuli, like noise, touch and emotional distress, which can set off muscle spasms. Treatment focuses on slowing down the disease’s progression rather than curing it.

Dion’s latest album, Courage, was released in 2019.

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