Celine Dion, the superstar vocalist, has opened up about her decade-long battle with stiff-person syndrome (SPS), a rare neurological disorder that nearly took her life. Dion, 56, revealed that during the years of testing to arrive at the correct diagnosis, she became dangerously dependent on Valium, taking life-threatening doses to find relief from the painful muscle spasms caused by SPS.
"I did not know, honestly, that it could kill me," Dion told NBC News' Hoda Kotb. "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." As her body grew accustomed to the medication, Dion found herself taking up to 90 milligrams of Valium daily to ease the intense muscle spasms that can cause a person with SPS to break their ribs.
Dion's symptoms first became apparent during her 2008 Taking Chances World Tour, ahead of a concert in Germany. "I said to my assistants and to my people, 'I don't know if I can do the show. I don't know what's happening,'" she recalled, mimicking her voice at the time. "I was very, very, very scared."
The global COVID-19 pandemic provided Dion with an unexpected opportunity to gain control of her health and curb her dangerous dependency on medication. "It was an opportunity for me to take a break," she said. "Do not be brave. And to be smart. ... I stopped everything with the help of doctors. I was weaning off all the meds, and especially the bad ones. I stopped everything because it stopped working."
Despite no longer taking the stage, Dion's symptoms persisted, and she and her team of doctors struggled to find the cause. "It's very complex. I wanted to - from head to toe - figure it out," she told Kotb. "And I wanted to also figure out: 'Is there something that I can do for myself or am I at the end of my career?'"
Dion began shooting a documentary, titled I Am: Celine Dion, with filmmaker Irene Taylor about her experience, which premieres on Amazon Prime June 25. The film provides a rare glimpse into Dion's private life and the shocking reality of living with SPS. "It shows in real life what this disease is like. It shows how it happens," Taylor tells NBC News. "One moment she was giggling, and five seconds later, we were in a totally different stratosphere."
In PEOPLE's latest cover story, Dion further elaborated on her health journey, expressing gratitude for the lessons learned along the way. "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 emphasized. "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."
Following her SPS diagnosis in August 2022, Dion began a comprehensive treatment plan involving medication, immune therapy, vocal therapy, and intense physical rehabilitation five days a week. Dr. Amanda Piquet, director of the autoimmune neurology program at the University of Colorado and the physician who diagnosed Dion, calls the singer's treatments a "full-time job" and urges patients to remain hopeful, as research and clinical trials continue to make strides in understanding and treating SPS.
Dion remains determined to return to the stage, no matter the challenges she faces. "I'm gonna go back on stage, even if I have to crawl, even if I have to. I will," she told Kotb. "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."
