Celine Dion, renowned for her iconic voice and enduring stage presence, has candidly shared her journey with stiff-person syndrome in her latest documentary, I Am: Celine Dion. The award-winning singer-songwriter revealed the reasons behind her decision to disclose her rare neurological disorder to the world.
In the emotionally charged documentary, Dion tearfully expressed her realization that concealing her condition with daily medications, including high doses of Valium, became increasingly unsustainable as she struggled with muscle stiffness and spasms. The disorder began affecting her ability to perform, leading to difficult decisions to cancel shows.
“I was taking those medicines because I needed to walk. I had to be able to swallow. I needed medicine to function. One more pill. Two more pills. Five more pills. Too many pills. The show must go on,” Dion shared. “When I had to cancel shows, you know, we have to tell people why. Lying — I can’t lie anymore, from a sinus infection to an ear infection, to whatever.”
The revelation also included Dion’s candid admission about how she coped during performances, often resorting to creative tactics to navigate challenging moments on stage.
“Sometimes I would point my microphone towards the audience and I would make them sing it,” she confessed. “There’s moments where I cheated and I tapped the microphone like it was the microphone’s fault… There’s also moments where we had to stop the show. Quick change, and I never came back.”
Reflecting on the burden of secrecy, Dion emphasized, “The lie is too heavy now.”
The singer initially disclosed her diagnosis via an Instagram video in 2022, following the cancellation of her Las Vegas residency and subsequent tour dates. Addressing her fans directly in the video, which is featured in the documentary, Dion described stiff-person syndrome as affecting “something like one in a million people,” and expressed hope for recovery.
“For me to reach you again, I have no choice but to concentrate on my health at this moment, and I have hope that I’m on the road to recovery,” she shared in the heartfelt message.
Despite the setbacks caused by her condition, Dion remains optimistic about returning to the stage.
“I’m gonna go back onstage, even if I have to crawl. Even if I have to talk with my hands. I will. I will,” she affirmed in a recent interview with Hoda Kotb on Today. “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.”
