When Céline Dion first received her stiff person syndrome diagnosis in August 2022, she kept the life-altering condition private. It would be several months until she shared the news publicly, but in the interim, she was actively learning more about the disease and trying to combat her symptoms.
Dion's body would spasm or "lock," as she has since described.
It was recommended she try prescription drugs, including Valium, a medication that can be used as a muscle relaxant. She'd already exhausted other options, such as steam showers, over-the-counter medication and visits to ear, nose and throat doctors. The less extreme treatments did not work.
"We started with two milligrams to see if it would help, and then 2.5, and then 3, and 15 and 50," Dion told People magazine in a new interview. The Canadian singer admitted that the medication wore off so expeditiously that she once took 90 milligrams of Valium to get through a performance.
"It could have been fatal," she said. "I did not question the level because I don't know medicine. I thought it was going to be okay. It worked for a few days, for a few weeks, and then it doesn't work anymore."
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"I did not understand that I could have gone to bed and stopped breathing. And you learn – you learn through your mistakes." The "My Heart Will Go On" singer said she feels "very, very happy and fortunate" to have the opportunity to share this knowledge with others.
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"It's very important to know... people who know me well enough, they know that I did not take medicine just to drug myself, just to be high or to be stoned," she clarified. "I have been as professional as can be through my whole life, a disciplined, hard-working person doing what I need to do for my voice to be in top shape."
"I did not understand that I could have gone to bed and stopped breathing. And you learn — you learn through your mistakes."
Fighting back tears in December 2022, Dion announced her SPS diagnosis in an emotional Instagram video, pre-recorded in both English and French. "I've been dealing with problems with my health for a long time. And it's been really difficult for me to face these challenges and talk about everything that I've been going through," she said. Dion detailed the specific problems she had been experiencing, including mobility issues.
"While we're still learning about this rare condition, we now know this is what has been causing all of the spasms I've been having. Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I'm used to," she said.
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"I'm working hard with my sports medicine therapist every day to build back my strength and my ability to perform again. But I have to admit it's been a struggle. All I know is singing. It's what I've done all my life. And it's what I love to do the most," she expressed at the time.