Celine Dion is getting more candid about her health journey with stiff person syndrome.
The singer has previously shared her hopes for performing again and living as normally as possible despite her diagnosis. But in a new interview with Vogue France, Dion seemed uncertain that she’d be back on stage and touring.
“I can’t answer that … Because for four years I’ve been saying to myself that I’m not going back, that I’m ready, that I’m not ready,” she told Vogue France. “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.”
“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,” she said.
Dion first revealed in the fall of 2022 that she had stiff person syndrome, which is a rare autoimmune neurological disorder that causes muscle stiffness and spasms that limit mobility, as well as other symptoms like double vision and slurred speech, according to Johns Hopkins School of Medicine.
In December, the singer’s sister Claudette Dion shared an update that Celine Dion had lost control of her muscles. Prior to that, the singer had to cancel her European tour, which was scheduled to run from Aug. 26, 2023 through April 22, 2024.
As far as how she’s doing now, Dion said she is well, but that her illness is a lot of work and she is taking things one day at a time.
“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 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?” she said.
Dion said she is focused on living in the present and staying grateful.
In February, Dion made a surprise and rare public appearance during the 66th annual Grammy Awards.
Johns Hopkins School of Medicine says there is no current cure for stiff person syndrome, but working with a specialist and maintaining symptom control can make living with the disease more manageable.
