Céline Dion discusses living with stiff person syndrome: 'I want to be the best I can be'

Céline Dion discusses living with stiff person syndrome: 'I want to be the best I can be'

The singer was diagnosed with the rare autoimmune neurological disorder in 2022.

Céline Dion isn't letting her diagnosis of stiff person syndrome dictate her life.

In a new interview with Vogue France, the queen of power ballads, 56, opened up about her condition and said she's been learning to live with it after an otherwise difficult period. "It's a lot of work," Dion said. "I'm taking it one day at a time."

She added, "I haven't beat the disease, as it's still within me and always will be. 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."

The Grammy-winning Canadian singer currently undergoes athletic, physical, and vocal therapy for five days a week. "I work on my toes, my knees, my calves, my fingers, my singing, my voice," Dion 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?"

<p>Swan Gallet/WWD/Penske Media via Getty </p> Celine Dion

Swan Gallet/WWD/Penske Media via Getty

Celine Dion

Of course, "life doesn't give you any answers," she mused. "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. 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."

Dion said the "love of my family and my children, the love of the fans too, and the support of my team" help her most during her fight. "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."

Dion was diagnosed with stiff person syndrome, a rare autoimmune neurological disorder (for which there is no current cure) that causes muscle stiffness and painful spasms, in 2022. Her sister Claudette shared last year that she had lost control over her muscles. But the resilient Dion, who has largely kept out of the public eye since her diagnosis, said last month in a social media post for International Stiff Person Syndrome Awareness Day that she was determined to get back on stage.

When that will be is still up in the air. "I can't stand here and say to you: 'Yes, in four months' [I will return]. I don't know. My body will tell me," Dion told Vogue France. "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."

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