Celine Dion has opened up about her ongoing struggle with Stiff Person Syndrome in a recent interview, sharing that her symptoms first appeared as early as 2008.
The 56-year-old My Heart Will Go On singer revealed her diagnosis to the public in 2022, but in a new interview with VOGUE France, she acknowledged that she has been coping with side effects from the rare neurological disorder for nearly two decades.
Urging her fans not to overlook any concerning medical symptoms of their own, she said: “It might seem weird to say this, but I was happy when I was told what it was. I was finally going to be able to live with this illness and no longer suffer from it.
“I hope this won’t scare people off [from getting a diagnosis] and will alert them instead. It took me 17 years to understand what was going on. I beg of you, don’t wait that long!”
Celine’s Secret Health Battle
“I was struggling to control it. I was able to go very high, but then my voice was wracked with kind of spasms. I did what one is meant to do in these days: I went to see a doctor,” she recalled.
“I was struggling to move. I had to lean on something to be able to walk,” the star said.
Seeking the Help She Needed
During the COVID-19 pandemic, Celine Dion finally prioritized her health and focused on uncovering the root cause of her unusual symptoms. She retreated to her $1.2 million Las Vegas home with her children René-Charles, 23, and twins Eddy and Nelson, 13, whom she shares with her late husband René Angélil, to begin this process.
“I told myself the universe had sent me a sign with Covid: I needed to make the most of this time of rest to discover what was going on,” she told VOGUE.
“For years and years, I shut my eyes to it. I hid it from my friends, my family, my children… I held out for as long as possible. I needed to stop being so brave. I needed to take care of it.”
Now, the star is focused on sharing her news with the world in her new documentary, I Am: Celine Dion, set to drop on Amazon Prime Video on June 25.
Reflecting on what the documentary taught her, Celine mused: “What is my purpose in life? To be a singer? A spokesperson for stiff person syndrome? A mother? Or all this at the same time?
“Today marks the beginning of the rest of my life. I’ve never sung this song before. But it’s going to be the most important song of my life.”
Celine’s Stiff Person Journey
Stiff Person Syndrome is a rare neurological disorder characterized by muscle rigidity, particularly in the trunk and arms. This stiffness is often triggered by noise, touch, and emotional distress. Celine Dion’s condition involves muscle spasms, which are a hallmark of the disorder.
People with Stiff Person Syndrome frequently experience falls because they lack defensive reflexes that would normally protect them. This can lead to difficulties in walking or moving, and the disorder is more common in women than in men.
The cause of Stiff Person Syndrome is not known, and it is often misdiagnosed as other conditions such as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia.
There is no cure for the disorder, but symptoms can be managed with treatments such as anti-anxiety drugs, muscle relaxants, anti-convulsants, and pain relief medications.
In October 2021, Celine Dion worried fans when she announced she would be delaying her Las Vegas shows due to “severe and persistent muscle spasms”. This led to the cancellation of the North American leg of her Courage world tour in January 2022, followed by the cancellation of her European dates.
In December 2022, Celine courageously shared her diagnosis with the world in a heartfelt video, revealing her battle with Stiff Person Syndrome. As a result, she took a step back from her career, refraining from public appearances to focus on her health.
Since December 2024, Celine has slowly begun to return to the spotlight. She made her first public appearance in over three years last winter, where she “sang a few notes”.
Celine Dion marked her comeback to the stage at the Grammys in February, receiving a standing ovation from the audience as she made a surprise appearance to present Taylor Swift with the Album of the Year award.
