Céline Dion’s decision to publicly announce her stiff-person syndrome diagnosis was difficult for the music queen.
During a teaser interview with Hoda Kotb on Monday, June 10, Dion opened up about her experience with the rare neurological condition, stating she stayed quiet about it at first since she was still trying to figure out what was going on with her health.
What did you want me to say? “I have…what?” Dion, 56, explained. “We did not know what was going on.”
Dion first experienced signs of the illness, which causes excruciating muscle spasms, during her Taking Chances World Tour of 2008. She wouldn’t reveal her illness until December 2022, when she announced in an Instagram video that she was postponing several gigs.
READ MORE: Céline Dion’s Documentary Teaser Shows Her Tearing Up As She Fights With Stiff Person Syndrome
“I did not take the time I should have stopped, to figure it out,” Dion said Kotb, noting that her late husband René Angélil was being treated for throat cancer at the time she began seeing symptoms of her ailment.
“My husband as well was fighting for his own life,” she continued. “I had to raise my children while hiding. I had to attempt to be heroic.”
She was also trying to work through her own feelings about her illness. “Feeling my body leaving me, holding on to my own dreams,” Dion remarked, describing some of her worries at the time.
Dion eventually said that she felt compelled to share the truth. “I could not do this anymore,” she remarked. “Lying for me was a heavy responsibility. I couldn’t keep lying to the folks that helped me get where I am now.
Dion’s interview with Kotb will run in its entirety on Tuesday, June 11, at 10 p.m. ET.
In an earlier footage from the talk, the five-time Grammy Award winner discussed how the disease affected her voice. “It feels like someone is strangling you. “It’s like someone is pushing your larynx/pharynx,” she explained, lifting her voice to show the effect. “It was like talking like that, and you cannot go high or lower.”
She went on to say that the rigidity might sometimes feel as if it is stuck in place. “It feels like, if I point my feet, they will stay in [that position],” stated the “Power of Love” performer. “It cramps, but it’s as if you can’t unlock them. I’ve cracked ribs before because it can break when it’s quite intense.”
The interview comes ahead of the Prime Video documentary I Am: Céline Dion, which follows the Grammy-winning icon as she battles a rare condition and struggles to return to the stage.
“I wasn’t ready to say anything before,” Dion stated in the poignant clip, “but I’m ready now.”
“I really miss it. I miss the folks. If I am unable to run, I will stroll. “If I can’t walk, I’ll crawl,” she says, vowing to do whatever it takes to regain control of her health and return to the stage.
Today airs daily at 7 a.m. ET on NBC. I Am: Céline Dion launches on Prime Video on June 25th.
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