Céline Dion shares heartrending diagnosis: ‘I have Stiff Person Syndrome’

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Céline is one of the world’s most loved artists, but she hasn't performed in over a year. (PHOTO: Gallo Images/Getty Images)
Céline is one of the world’s most loved artists, but she hasn't performed in over a year. (PHOTO: Gallo Images/Getty Images)

She’s been out of the limelight for so long that some websites went as far as to claim the “sad news” that she’d died. She was under the radar for about a year after being plagued by health problems, and looked increasingly frail in her last public appearances. 

But Céline Dion is very much alive and has now finally revealed what has kept her out of the limelight for so long.

In a tearful post on Instagram, the 54-year-old Canadian singer broke the news that she has been diagnosed with Stiff Person Syndrome (SPS), a condition which causes muscles to tense uncontrollably and ultimately can leave sufferers as “human statues” as it progressively locks the body into rigid positions.

“I’ve always been an open book and I wasn’t ready to say anything before but I’m ready now.”

“I’ve been dealing with problems with my health for a long time and it’s been really difficult for me to face my challenges and to talk about everything that I’ve been going through.

“Recently I’ve been diagnosed with a very rare neurological disorder called the stiff person syndrome which affects 1 in a million people

“While we’re still learning about this rare condition, we now know this is what’s been causing all the spasms I’ve been having.”

While there is no cure for it, there are treatments to slow down the progression, and Céline says she is doing everything within her power to minimise symptoms. 

She also announced she would have to cancel her upcoming European Courage tour again, but hoped to resurrect it again in 2024. She had only recently announced that the tour was back on after postponing several times already due to her poor health.

Her fans rushed to give her their support with many sending love and wishes on social media.

The first sign of trouble on the health front came in October last year when Céline announced unexpectedly that she had to cancel new shows for her Las Vegas residency, which has been running for 19 years. 

“I’m heartbroken by this,” she wrote on Instagram. “But I have to focus on getting better.” 

By January things hadn’t improved and she described on her official website how she was suffering from “severe and persistent muscle spasms” and had to cancel the upcoming North American leg of her Courage tour. 

“I was really hoping I’d be good to go by now, but I suppose I just have to be more patient and follow the regimen my doctors are prescribing,” she said. 

READ MORE | Will the music go on? A look inside Celine Dion's ongoing health struggles

Things hadn’t improved by April, and she announced the European leg of Courage had to be postponed too. “I’m so sorry,” she said. “First, we had to move the shows because of the pandemic. Now it’s because of my health issues. 

But health problems aside, it is clear things haven’t been great for the songbird for some time. 

In a new French auto­biography, Céline Dion: The Real Story – Secrets of a Fragile Idol, authors Laurence Pieau and Hervé Tropéa paint a picture of a star who’s become increasingly insular since her husband, René Angélil, died in January 2016. 

The authors asked Céline for an interview, but she declined, so they quote relatives, members of her team as well as Canadian journalists who’ve followed her for years. 

(PHOTO: Robert Laffont)
She’s the subject of a new French biography that paints her as lonely and vulnerable. (PHOTO: Robert Laffont)

“What has surprised me over the past few years is this immense loneliness,” Pieau, a former magazine editor, says. “She lets few people be around her.” 

The authors claim even her sister, Claudette Dion, who often speaks on Céline’s behalf, rarely sees her in person. 

“Many people close to her have said if she doesn’t want to speak, it’s that she’s not well and that must be respected,” Tropéa says. “But on the other hand, fans and the whole world are waiting and worried.” 

READ MORE | Her heart will go on: why Celine Dion's not yet ready to fall in love again

The book begins with the night René died and follows Céline’s emotional journey as she battles to come to terms with the loss of the man who helped turn her into a superstar. 

While the authors say she is “strong and courageous”, she is also “sad, unsettled and vulnerable”. Tropéa believes she’ll come back “but differently”. 

“I don’t think her health will allow her to tour extensively.” 

 (PHOTO: Gallo Images/Getty Images)
With her late husband, René Angelil, who she’s described as the love of her life. (PHOTO: Gallo Images/Getty Images)

Finding love again has also so far eluded her.  She’s often described her husband as the “one and only love of my life”. 

“I’ll never find another like René,” she told Entertainment Tonight in 2019. 

According to the authors of the biography, René arranged everything before his death so his wife could continue her career. But she wanted to do things her way – like getting her eldest son, René-Charles (21), on board as her manager. 

It was a bit of a blow when he refused because he wanted to carve his own way in the world. “She was bruised by that,” Pieau says. 

René-Charles is an aspiring rapper who sings under the name Big Tip. 

But if Céline was indeed wounded by his rejection, it didn’t fundamentally affect their relationship. She’s close to him and her 12-year-old twins, Nelson and Eddy, and on Mother’s Day shared a rare photo with all three boys. 

(PHOTO: Instagram/CelineDion)
The singer with her children, twins Nelson (left) and Eddy and elder son René-Charles. (PHOTO: Instagram/CelineDion)

“I’m so fortunate to be with my children,” she said. “I think about mothers in Ukraine and around the world who have lost their children.” 

In some good news she recently announced she’ll be starring in a romcom with Outlander actor Sam Heughan and Priyanka Chopra Jonas. 

Fans too are looking forward to her movie, which comes out in May.

Céline recently shared two shots from the film on social media alongside the caption, “See you at the movies!”

She plays herself as a mentor who inspires the two main characters to fall in love, and she’ll also be doing the music for the movie. Fans were overjoyed at the news.

“Can we fast-forward to May?” one asked. “I’m crying,” another said. “We missed you so much.”

Despite her ongoing challenges, Céline says she’ll never stop performing. “The adrenaline is like a drug. So that’s why I keep doing it – it’s addictive.” 

She called her world tour Courage because it says so much about her, she adds. “It represents a whole new life for me – the album, the tour, the way to dress, the way to say you can’t please everyone. 

“I want to feel great about myself and my decisions. It’s all about courage and I think everyone should feel like that.”

Sources: hellomagazine.com, ETOnline.com, etalk.ca, Instagram, people.com, smoothradio.com, journaldequebec.com

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