‘Nothing is going to stop me’: Celine Dion details life with stiff person syndrome

<span>‘I would ask myself: why me?’ … Celine Dion performing in 2016.</span><span>Photograph: Philippe Lopez/AFP/Getty Images</span>
‘I would ask myself: why me?’ … Celine Dion performing in 2016.Photograph: Philippe Lopez/AFP/Getty Images

Celine Dion has opened up about life with stiff person syndrome (SPS), a debilitating condition that she was diagnosed with in 2022.

SPS, an extremely rare autoimmune neurological disorder affecting an estimated 8,000 people worldwide, causes muscle spasms and stiffness and can cause a loss of mobility. In Dion’s case, she has previously said that the illness is “causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to”.

She has been forced to put her career on hold since the diagnosis, cancelling all of her 2023 and 2024 tour dates.

Speaking to Vogue France, the Québécois singer described her despair in the early stages. “At the beginning I would ask myself: why me? How did this happen? What have I done? Is this my fault?”

She continued: “Life doesn’t give you any answers. 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. My goal is to see the Eiffel Tower again! … I have this strength within me. I know that nothing is going to stop me.”

There is currently no cure for SPS and Dion, who is 56, said: “For now, I have to learn to live with it … 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.”

She said she couldn’t confirm a return to the stage: “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.

“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.”

Dion’s career was flourishing at the time of her diagnosis, with worldwide touring and the continuation of her Celine concert residency in Las Vegas. Her most recent album, Courage, released in 2019, topped the US chart and reached No 2 in the UK. She also filmed her acting debut prior to her SPS diagnosis, appearing opposite Priyanka Chopra Jonas and Sam Heughan in romantic drama Love Again.