This article was originally published in English
The singer opens up about her life since her career was put on hold due to a rare autoimmune disease, stiff person syndrome (SPS), in 2022.
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Celine Dion has given an update on her fight against the autoimmune disease which put her career on hold and kept her away from the stage for four years.
Diagnosed in the fall of 2022 with rare neurological disease known as stiff person syndrome (SPS)the 56-year-old singer says she’s on the comeback road.
In a long interview given to magazine Vogue Franceshe describes her daily and fierce fight against SPS.
The disease, she emphasizes, “it is always in me and forever (…) I must learn to live with it”.
“Why me? Am I responsible?”
The Quebec singer expresses his despair in the early stages of this extremely rare autoimmune neurological disease, which affects approximately 8,000 people worldwide.
“I started by saying to myself: why me? What happened? What did I do? Am I responsible?”
She continues: “Life doesn’t give you answers. You just have to live it! I have this disease for some unknown reason. I have two choices. Either I train like an athlete and 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. I have chosen to work with my whole body and my whole soul, from my head to my head. feet 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 in me.
Dion, who reappeared in public on February 4, 2024 during the last Grammy Awards ceremonywhere she presented the album of the year award to Taylor Swiftdescribes the “athletic, physical and vocal therapy” she undergoes five days a week.
Often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia or anxiety, SPS is a rare neurological disease that causes muscle rigidity and painful spasms. According to the National Institute for Neurological Disorders and Stroke (NINDS), it is characterized by “abnormal postures, often hunched and stiff” and affects twice as many women as men.
There is no known curebut she can be treated with anxiolytics, muscle relaxants, anticonvulsants, analgesics and immunoglobulin therapywhich can help reduce stiffness and sensitivity to noise, touch and other stressors.
“For four years, I told myself that I would not go back…”
Dion took a trip down memory lane and described the influence of singer-songwriter Jean-Jacques Goldman, who was instrumental in her breakthrough in France: “He taught me to give space to the music and the words. You can’t sing in French with English words, you can’t sing in English with French words. So he showed me how to let the words rely on the music to be able to imagine the story.
“Singing in English takes flourishes, it takes everything to impress and I love it.”, she adds. “Singing in French requires a lot because we want to use more subtlety. Sobriety is hard.”.
When asked if she is going to go back on stage and go on tour again, the singer remains cautious: “I can’t answer you. Because for four years, I told myself that I would not go back, that I am ready, that I am not ready…“.
She concludes: “Today, I cannot tell you: “Yes, in four months.” I don’t know… My body will tell me“.
Additional sources • Vogue France