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Céline Dion says it was 'intimidating' for her to say her name amid battle with rare disease: 'I did not know who I was anymore'

By Melanie Uson Published Jun 12, 2024 1:14 pm

Céline Dion has opened up anew about her struggles amid her battle with stiff person syndrome, including how it became “intimidating” for her to say her name because she “did not know who [she] was anymore.” 

In her interview with TODAY’s Hoda Kotb aired on Tuesday, June 11, Dion got real about her recent challenges, including how she grew resentful about her own name. 

"It's intimidating for me to say my name because I hear it a lot...and when you're not well, I did not want to hear my name,” she said. 

“I did not know who I was anymore because I'm not the person that I used to be,” she added.

She also recalled the time she had to “lie” to her audience during her shows, like pretending that the mic was not working, or asking them to sing instead. 

"I was trying to survive," she told TODAY, adding, "I let the people sing with me a lot." 

Dion also bared why she did not focus yet on understanding her condition, sharing it was also the time when her late husband, René Angélil, was “fighting for his own life” amid his battle with throat cancer. 

"We did not know what was going on. I did not take the time [to rest]. I should have stopped, taken the time to figure it out,” The Power of Love singer lamented. 

“I had to hide. I had to try to be a hero. I became a nurse. I became a supporter. I had to protect my kids, practice my passion,” she added.

Angélil succumbed to the disease in 2016. 

Dion disclosed in December 2022 that she had been diagnosed with stiff person syndrome, which is "a rare, progressive syndrome that affects the nervous system, specifically the brain and spinal cord," according to the National Institute of Neurological Disorders and Stroke

It causes muscle stiffness as well as spasms, normally between the ages of 30 and 60. The symptoms can remain stable in some cases but could get progressively worse in others. 

According to Dion, she had broken ribs at some point because of the severe spasms. She also previously shared how she feels being “strangled” whenever she tries to sing amid the disorder. 

Despite this and the canceled shows, the All By Myself singer is positive that she will be back onstage again. 

"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," she said.

She added, "I am Céline Dion, 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."