Iconic singer Céline Dion opens up about her journey with Stiff Person Syndrome, expressing hope for a medical breakthrough while learning to adapt to the condition’s challenges.
After being diagnosed in December 2022, Dion made a surprise appearance at the Grammys in February, receiving a heartfelt standing ovation.
Despite stepping back from her touring commitments, she remains determined and resilient in her approach to managing the neurological disorder.
“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,” Dion told Vogue France.
“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… 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?”
Dion revealed her rigorous five-day-a-week routine, encompassing physical, vocal, and therapeutic exercises to maintain her strength and well-being.
“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!”
Reflecting on her experience, she acknowledged the initial struggle of questioning why the disease had affected her.
Optimistically, Dion shared her commitment to embracing life fully, balancing between rigorous training and moments of introspection.
While her return to performing remains uncertain, she remains driven by her passion, determination, and unwavering dream to continue pursuing her artistry.
‘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,’” she said.
“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 the determination.”
As she navigates this journey, Dion’s story embodies resilience, hope, and the enduring spirit of an artist facing life’s challenges head-on.
Mayo Clinic defines Stiff-person syndrome as an autoimmune disorder of the nervous system, often resulting in progressive, severe muscle stiffness and spasms of the lower extremities and back. It also can affect other body regions.
“This neurological disorder can affect anyone at any age,” says Dr. Andrew McKeon, a Mayo Clinic neurologist and expert in autoimmune neurology and movement disorders. “More commonly, it affects women, usually starting in the 40s or 50s.