In a new interview with Vogue France Celine Dion opened up about her battle with stiff person syndrome (SPS) and talked about the "dream" of performing again one day.
Dion was diagnosed with SPS—an autoimmune disorder that causes muscle stiffness and spasms and sometimes unsteady gait, double vision or slurred speech—in December 2022, and though she makes few public appearances, she has used her platform to speak on living with the neurological disorder.
Last month, the singer took to Instagram to recognize SPS Awareness Day, writing:
"Today the world recognizes International SPS Awareness Day."
"As many of you know, in the fall of 2022, I was diagnosed with Stiff Person Syndrome (SPS). Trying to overcome this autoimmune disorder has been one of the hardest experiences of my life, 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 finished her caption with a message of encouragement.
"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!"
And now in her cover story for Vogue France, the Grammy winner maintains her positive disposition despite setbacks she's faced so far.
She told the publication:
“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.”
Dion undergoes “athletic, physical and vocal therapy” five days a week, but she says she'll do what it takes to "be the best I can be."
“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. My goal is to see the Eiffel Tower again!”
And though Dion did share a stage with Taylor Swift when she presented her with the Album of the Year Grammy in February, the singer is unsure when she'll be able to perform again, though it is still “the dream."
"... for four years I’ve been saying to myself that I’m not going back, that I’m ready, that I’m not ready."
“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.”
While people on social media do want to see Dion on the stage again, they also respect that she is doing what is best for her health.
And they can't get over that cover shoot, either.
In a new documentary set to come out on June 25, Dion gives more insight into living with SPS.
A press release for I Am: Celine Dion states:
“This intimate exploration takes viewers on a journey inside Celine’s past and present as she reveals her battle with stiff person syndrome (SPS) and the lengths she has gone to continue performing for her beloved and loyal fans."
“From visiting her couture touring wardrobe and personal effects to spending time in the recording studio, the documentary captures a global megastar’s never-before-seen private life."
"An emotional, energetic, and poetic love letter to music, ‘I Am: Celine Dion’ captures more than a year of filming as the legendary singer navigates her journey toward living an open and authentic life amidst illness.”
The documentary will be available on Amazon Prime Video.
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