Celine Dion says she's been battling her rare illness for 17 years and, at one point, was taking nearly lethal doses of Valium to deal with the terrifying symptoms.
The Canadian superstar opened up about her life-altering neurological disorder during her emotional sit-down interview with NBC's Hoda Kotb on Tuesday night, saying she should have stopped performing earlier to figure out what was wrong.
The 56-year-old singer says she first began noticing symptoms of stiff person syndrome during her Taking Chances World Tour in 2008, as her voice faltered during shows in Germany and her body became more rigid.
"It (felt) like somebody is strangling you," she said. "It's like somebody is pushing your larynx... and you cannot go higher or lower."
Dion says she and her team kept quiet about it because they weren't sure what was happening with her health.
"We did not know what was going on (with me). I did not take the time… I should have stopped; took the time to figure it out," she said.
She told Kotb she was prescribed Valium to cope with her symptoms before receiving her stiff person syndrome diagnosis in 2022. Dion says she began taking progressively higher doses of the drug so she could perform for her fans and built such a high tolerance that she was taking 90 milligrams a day at one point.
"90 milligrams of Valium can kill you. You can stop breathing at one point. The thing is that my body got used to it at 20 (milligrams) and 30 and 40, until it went up. And I needed that. It was relaxing my whole body for what, for two weeks, for a month. Okay, the show must go on," she said.
"I did not know, honestly, that it could kill me."
Dion says she eventually weaned herself off the drug with the help of doctors because "it stopped working."
It took more than a decade of tests and treatments for Dion to get an official diagnosis of stiff person syndrome, a progressive condition that leads to muscle rigidity and painful spasms.
Dion says she finally shared her diagnosis with the world in December 2022 because she felt like she was "lying" to the people who got her 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 take care of their kids.
"My husband, as well, was fighting for his own life. I had to raise my kids," she said.
"I had to hide. I had to try to be a hero. Feeling my body leaving me, holding onto my own dreams. And the lying for me was — the burden was like too much."
She says her condition has affected her ability to move over the years and that it got so severe at one point that she had "broken ribs" from severe spasms. At times, it felt like she was blacking out.
"It started here," she said, gesturing to her throat. "OK, it's going to be fine. Then you have a hard time to walk and then you're blind for two hours, and you're like, what happened? Am I missing something? Did I have a drop in sugar or something? You think of the simple things, not thinking you're going to die."
During the special, Dion's doctor said that while there is no cure for stiff person syndrome, it is treatable with a combination of immunotherapy, physiotherapy and medications.
The singer is vowing to return to the stage no matter what it takes. She sang several times throughout the special and her voice sounded in good form, hinting that she may be ready to perform again one day.
"I'm going to go back on stage. Even if I have to crawl. Even if I have to talk with my hands. I will," she said.
"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 to. It's because I want to."
A documentary about her health struggle, "I Am: Celine Dion," is set to premiere June 25 on Prime Video.
This report by The Canadian Press was first published June 12, 2024.
Alex Nino Gheciu, The Canadian Press
