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Celine Dion on Her Battle With Stiff Person Syndrome: ‘I’m Going Back Onstage, Even if I Have to Crawl’

The iconic singer shared more about her health condition and the hurdles she's facing 

Céline Dion has been candid about her battle with stiff person syndrome, and sat down for a broadcast interview in June, her first since sharing her diagnosis with the world. Although she only revealed the news in 2022, the “My Heart Will Go On” singer has been experiencing these symptoms for nearly two decades. Keep scrolling to learn everything the singer shared, including updates on her career.

Celine Dion opens up about her health and stiff person syndrome battle

On June 11, Dion’s first exclusive interview about her condition was aired on TODAY. Speaking with Hoda Kotb about her experiences, Dion gave insight into how she had dealt with the life-changing diagnosis.

What is stiff person syndrome?

The rare disease is a neurological disorder which causes muscle stiffness and can result in repeated episodes of painful muscle spasms. Dion shared in her interview what it is like to sing with the disease, tragically revealing, “It’s like somebody is strangling you.”

While keeping her diagnosis hidden from the world, Dion said that she “had to lie” to audiences, especially before she knew herself what was going on.

Will Celine Dion return to the stage?

celine dion singing
Céline Dion performing (2015)Getty

It has been a question whether audiences would get to her one-in-a-million voice again and Dion is setting the record straight. The singer shared with Kotb her plans to return. “I’m going to go back onstage, even if I have to crawl. Even if I have to talk with my hands. I will. I will.”

Of course, Dion is best known for her power ballads and hitting notes out of most people’s ranges. And after she sang on the soundtrack for both Beauty and the Beast (1991) and Titanic (1997), her fame only skyrocketed.

But after her diagnosis was revealed, fans were worried to never hear her beautiful voice on stage again.

“I am Céline Dion,” she continued. “Because today my voice will be heard for the first time, not just because I have to, or because I need to. It’s because I want to. And I miss it… you better be ready.”

Although Dion hasn’t shared plans for when she will return to the stage, the singer did seem adamant about doing so.

Celine Dion shares how she opened up with her children amidst her illness

While the singer has had to learn how to deal with her medical episodes, she also shared with Kotb that she had to teach her children what to do as well. Dion explained she spoke with her twins, 13-year-old sons Nelson and Eddy, about what to do if they witness an attack.

She explained that her sons “know what to do: Call 9-1-1.” But she also was sure to tell her sons not to worry. “Don’t be scared if I can’t talk. Mom’s not dying. Mom cannot use her vocal cords. If I (cannot) respond to you, it’s possible that I hear you, but I cannot communicate.”

Dion’s late husband, René Angélil, passed away in 2016 , causing the singer to assure her sons that she will be fine. She shared in the interview that she wants her sons to know, “Mom is going to be OK.”

Celine Dion on why she decided to share her diagnosis

woman singing
Céline Dion performing (1992)Getty

Although the singer kept the neurological disorder private for a while, she decided in 2022 that it was time to open up. She explained in the interview that she wanted to understand what she could herself before sharing the news.

But after some time to sit with it and understand the diagnosis, she told Kotb, “I didn’t want to live in this bunker anymore … because the burden was so heavy.”Even though it took some time before Dion could share her diagnosis, it seems she is now ready to open up about her struggles and her hope of returning to exactly where she belongs: the stage. Fans can see more of Dion’s story of success and struggle in her new documentary, I Am: Céline Dion, which hits theaters on June 21.

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