Celine Dion said she became dependent on life-threatening doses of medication to help ease muscle spasms in the years leading up to her diagnosis of stiff person syndrome (SPS).
The music superstar, whose best-known hits include My Heart Will Go On, Think Twice and It's All Coming Back To Me Now, revealed her diagnosis in December 2022 as she cancelled her Courage World Tour.
Stiff person syndrome is a rare neurological disorder that causes progressive muscular stiffness, which can cause spasms that can be "abdominal, can be in the spine, can be in the ribs", Dion said.
Dion told Today host Hoda Kotb on NBC that prior to her diagnosis, she was taking diazepam, a drug commonly known as Valium, to help relax her "whole body" in order to perform on stage – but that she was not aware of the consequences.
"I did not know, honestly, that it could kill me," she said in her first broadcast interview since her diagnosis.
"I would take, for example before a performance, 20 milligrams of Valium, and then just walking from my dressing room to backstage, it was gone already."
Dion said as her body became accustomed to the medication, she would feel her symptoms again after 20 minutes and thus began to raise her dosage.
"You get used to it, it doesn’t work," she told NBC.
The singer revealed she was taking up to 90 milligrams a day, an amount that can "kill you", she said.
With the help of doctors, Dion weaned herself off the medications, "especially the bad ones", during the pandemic.
"I stopped everything because it stopped working," she said.
In an exclusive interview with TODAY, singer Celine Dion reveals why she decided to come forward with her diagnosis for stiff person syndrome. "I could not do this anymore," she says, adding, "Lying for me, the burden was too much." pic.twitter.com/LJvUrcFjpO
— TODAY (@TODAYshow) June 10, 2024
On reflection, Dion said she should have taken the time to "figure it out" instead of pushing through performances, however it coincided with the period in which her late husband, Rene Angelil "was fighting for his own life".
He died in January 2016 from throat cancer.
"I had to hide. I had to try to be a hero," Dion said.
"Lying for me, the burden was too much…I could not do it anymore," she said, explaining her decision to publicly reveal her health battle.
Despite her diagnosis, Dion said she plans to perform 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.
"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. And I miss it."
Dion has documented her health battle in a new Prime Video film called I Am: Celine Dion, which is set to air on 25 June.
Directed by Oscar-nominated filmmaker Irene Taylor, it will offer a behind-the-scenes look at the Canadian singer’s life since being diagnosed and the lengths she has gone to in order to carry on performing.
The main symptoms of SPS are muscle stiffening and spasming and there is currently no cure for the disease, but there are ways for it to be treated including through the use of muscle sedatives and relaxants.
Physical and occupational therapy is also a treatment route for people with SPS.
Dion has sold more than 250 million albums during her 40-year career, earning five Grammys, two Oscars and the Billboard Music Award lifetime achievement icon award.
Source: Press Association
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