Celine Dion Opens Up About Stiff Person Syndrome Battle While Covering Vogue France

22/04/2024 18:51

"I didn't fight the disease, it is still in me and forever. We will find, I hope, a miracle, a way to cure it with scientific research, but I must learn to live with it," Dion said was discussing her Stiff Person Syndrome diagnosis.

Celine Dion is sharing an update about her battle with Stiff Person Syndrome.

In a new cover story for Vogue France, the "My Heart Will Go On" singer said she's learning how to live with the disease, and is still hopeful a cure is in sight.

"I didn't fight the disease, it is still in me and forever. We will find, I hope, a miracle, a way to cure it with scientific research, but I must learn to live with it. So that's me, now with stiff person syndrome," Dion -- who was diagnosed with the disease, also called SPS, back in December 2022 -- told the magazine.

She continued, "Five days a week I do athletic, physical and vocal therapy. I work on my toes as well as my knees, calves, fingers, singing, voice... This is the condition with which I must learn to live now by stopping questioning myself. I started by saying to myself: why me? What happened ? What did I do ? Am I responsible? Life doesn't give you answers. You simply have to live it! I have this disease for some unknown reason."

The way she looks at it, Dion said she has two choices: either train and work super hard to combat the effects of the disease, or lose the life and career she's worked so hard for.

"Either I train like an athlete and I work super hard or I disconnect and it's over, I stay at home, I listen to my songs, I stand in front of my mirror and I sing to myself," Dion explained. "I chose to work with all my body and all my soul, from head to toe with a medical team. I want to be my best self."

Her end goal? Besides getting back on the road and touring, Dion said she'd like to see the Eiffel Tower again.

As for when that will be, she said she's not so sure.

"For four years, I told myself that I would not go back, that I am ready, that I am not ready… Today, I cannot tell you: 'Yes, in four months.' I don't know... My body will tell me,'" she said of possibly touring with music again. "On the other hand, I don't want to just wait. It's morally hard to live from day to day. It's difficult, I'm working very hard and tomorrow will be even more difficult. Tomorrow is another day. But there is one thing that will never stop, and that is wanting. It's the passion. This is the dream. It's determination."

Dion first opened up about her diagnosis in 2022, in an emotional video in which she revealed her health problems and announced she'd be postponing her concerts in 2023.

"Recently, I've been diagnosed with a very rare neurological condition called stiff-person syndrome, which affects something like one in a million people," she said at the time. "While we're still learning about this rare condition, we now know that this is what has been causing all of the spasms that I've been having."

She later canceled her tour in May 2023, but she hasn't stopped living. In addition to training, Dion has most recently made a public appearance at the Grammys, where she appeared to be in good health, and has continued to wow with her show-stopping fashion and beauty looks.

As for what it feels like to be defying the boundaries of beauty and fashion as a woman in her 50s, Dion said she feels "very lucky."

"And I am honored to do a photoshoot for Vogue France. Because when I was at my best in terms of my physique and my beauty, at 30, no one ever asked me. I am very proud that at 55, I am asked to reveal my beauty," she gushed. "But what is beauty? Beauty is you, it's me, it's the inside, it's our dreams, it's today. Beauty is what surrounds us, it is there. There are people who see it. There are those who watch it."

Dion added, "Today, I am a woman who feels very strong to move forward. One day at a time."