Celine Dion says she experienced terrifying symptoms for years and decided to go public with her rare illness once the burden of lying to fans about her condition became “too much.”
The Quebec star talks about the neurological disorder that affects her life in an excerpt from her interview with Hoda Kotb, which will be broadcast in its entirety Tuesday evening on NBC.
The 56-year-old singer admits she should have stopped performing sooner to figure out what was wrong.
Dion said she began noticing symptoms of stiff person syndrome during her “Taking Chances” world tour in 2008, as her voice weakened during concerts in Germany and her body became more rigid.
Dion claims she and her team kept quiet about it because they didn’t know what was going on with her health.
It took more than a decade of tests and treatments to get an official diagnosis of stiff person syndrome, a progressive condition that causes muscle rigidity and painful spasms.
Celine Dion reveals she finally shared her diagnosis with the world in December 2022 because she felt like she was “lying” to the people who got her to where she is today.
She told Kotb that her body was failing her while her husband René Angélil was dying of cancer and she was trying to raise their children.
Her condition became so serious that at one point she had “broken ribs” from the spasms, she said.
“I should have stopped, taken the time to understand,” she admitted.
But the singer promises to return to the stage, even if she has to “crawl”.
I am Celine Dion, because today my voice will be heard for the first time, not just because I have to, or because I need it. It’s because I want it and I miss it.
Celine Dion
The full interview with Celine Dion will air at 10 p.m. on NBC.
A documentary about his health problems, I am: Celine Dionpremieres June 25 on Prime Video.