Céline Dion has kept a low profile since announcing that she had been diagnosed with the rare neurological disorder stiff-person syndrome in 2022. She hasn’t made many public appearances – with the exception of the 2024 Grammy Awards – or done a ton of interviews. But in a recent cover story for People, the singer opened up about her brutal health journey and the strength she’s found in her three sons who lost their father to throat cancer nearly six years prior to Dion’s diagnosis.
“I barely could walk at one point, and I was missing very much living. My kids started to notice. I was like, ‘Okay, they already lost a parent. I don’t want them to be scared,'” Dion told People. “I let them know, ‘You lost your dad, [but] mom has a condition and it’s different. I’m not going to die. It’s something that I’m going to learn to live with.”
In many ways, despite dealing with severe symptoms of SPS (including excruciating muscle spasms and difficulty walking and breathing), Dion has held up her end of the bargain, in trying to live life to the fullest with her children. In November 2023, Dion and her sons attended an NHL game in Las Vegas, taking time to meet the Montreal Canadiens after the game. In photographs posted to Instagram by the team’s vice president of communications, Dion is seen smiling and standing tall.
In other instances, Dion has had to make sacrifices, forced to announce the postponement and then cancellation of her tour in December 2022 and May 2023, respectively.
“I’ve been dealing with problems with my health for a long time, and it’s been really difficult for me to face these challenges and to talk about everything that I’ve been going through . . . It hurts me to tell you that I won’t be ready to restart my tour in Europe in February,” Dion captioned the announcement video in December. It was in this post that the singer shared her initial diagnosis with the world.
In the video, Dion disclosed that she’s been diagnosed with “a very rare neurological condition called stiff-person syndrome, which affects something like one in a million people.”
Stiff-person syndrome (SPS) is considered an autoimmune movement disorder, and it affects the central nervous system. The disorder is characterized by intense muscle spasms and abnormal posture. In some cases, SPS may become so severe it limits a person’s ability to walk or move, according to the National Institute of Neurological Disorders and Stroke. Women are much more likely to have SPS when compared to men, with symptoms usually developing between ages 30 and 60, Cleveland Clinic reports.
“Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to. . . . I’m working hard with my sports-medicine therapist every day to build back my strength and my ability to perform again,” Dion said back in December 2022.
Dion admitted to having ignored some of these symptoms when they initially presented themselves years ago. “I did not take the time – I should have stopped, take the time to figure it out,” she told Hoda Kotb in a preview of an interview airing June 11 at 10 pm. “My husband as well was fighting for his own life. I had to raise my kids, I had to hide. I had to try to be a hero.”
However, Dion has spent the last few years prioritizing treatment and rest. Her sister Claudette shared a few insights into her recovery in a July 2023 interview with Le Journal de Montreal. “I honestly think she needs rest most of all,” Claudette said in the interview statement translated from French. “She always goes above and beyond, she always tries to be the biggest, the strongest. At some point, your little heart and your little body speak to you. It is important.” Claudette also reiterated that her sister is dedicated to her recovery. “We trust her, it’s in her. She’s very disciplined in everything she does in her life.”
Treatment for SPS depends on the individual but may involve medications (including antiseizure medications, benzodiazepines, and/or anti-inflammatories) to manage muscle stiffness, spasms, and pain. Physical therapy, massage, water and heat therapy, and acupuncture have shown to be effective options as well, notes Cleveland Clinic.
While Dion hasn’t confirmed her exact treatment, she has opened up about her determination to get back on stage. “I miss it so much. The people, I miss them,” Dion said in a trailer of her upcoming documentary, premiering June 25. “If I can’t run, I’ll walk. If I can’t walk, I’ll crawl … I won’t stop.”
– Additional reporting by Alexis Jones and Abbey Stone
Alexis Jones is the senior health and fitness editor at PS. Her passions and areas of expertise include women’s health and fitness, mental health, racial and ethnic disparities in healthcare, and chronic conditions. Prior to joining PS, she was the senior editor at Health magazine. Her other bylines can be found at Women’s Health, Prevention, Marie Claire, and more.
Abbey Stone is the former interim content director at PS. She uses her decade-plus of digital media experience to bring great stories to life, specializing in health, feminism, and culture. She is the former editor-in-chief of Well+Good and has been an editor at other publications including Mental Floss and People. Her other bylines can also be found at The Daily Beast, Wondermind, She Knows, and more.
Sara Youngblood Gregory was a contributing staff writer for PS Wellness. She covers sex, kink, disability, pleasure, and wellness. Her work has been featured in Vice, HuffPost, Bustle, DAME, The Rumpus, Jezebel, and many others.
