Celine Dion, Hoda Kotb Jackson Lee/GC Images;John Nacion/Getty Images(2)
Céline Dion revealed she would take up to 90mg of Valium per day to ease her stiff-person syndromes in her first TV interview since her diagnosis.
“We tried a lot of things. Trying a lot of things when you don’t know what you have can kill you,” Dion, 56, told Hoda Kotb in the NBC News special, which aired on Tuesday, June 11. “I did not know, honestly, that it could kill me. I would take, for example, 20 mg of valium and just walking from my dressing room to backstage, it was gone already. That fast. 20 minutes.”
Dion said her body quickly adjusted to her prescribed dosages of diazepam, which she took to ease her symptoms before getting an official diagnosis. The medication, which treats anxiety, seizures, muscle spasms or twitches, would relax her momentarily enough to continue singing and performing, only for her need a higher dosage shortly after.
“It can kill you, you can stop breathing. And my body got used to it at 20, and 30 and 40 mg,” she continued. “It was relaxing my whole body but for how long? For two weeks, for a month? But then it doesn’t work anymore. More, more more.”
Although officially diagnosed in 2021, Dion began struggling as early as 2008. What began as a tickle in her throat that could be credited to “a little cold” eventually got worse and she would often have to “lie” about a broken mic or have her fans sing her songs back to her in order to cover up her pain on stage.
“I was trying to survive and I let the people sing with me,” she told Kotb of the maneuver.
Dion shared that at first, she would “compensate” by “finding another way to have a voice,” which included lowering her songs and their keys. “That’s fine. It was a smart thing to do. Different temperatures, weather, It’s OK,” she said. Then, however, she “started to find a tunnel to make [my throat tighter] and project more nasal.”
Eventually, she her whole body began getting “more rigid.” She would often see doctors just hoping they would “find something” wrong with her.
When the pandemic arrived in 2020, Dion called it “an opportunity for me to not be brave and to be smart for the first time.” Choosing to stop all her medicine “with the help of doctors,” Dion noted that “when you taper these drugs you can die as well. You cannot just stop everything. I stopped everything because it stopped working.”
Although off the medicine, her symptoms continued to progress, and she found herself having to “hold on to chairs and tables” just to get from one end of the room to another. She suffered multiple broken ribs from spasms and began “blanking out for hours,” but believed it was just a drop in blood sugar.
“You think of the simple things, you’re not thinking you’re gong to die,” she explained. “You can have what looks like seizures, you don’t remember everything.”
After finally being diagnosed in 2021, Dion said she wanted to be honest with her fans — and expressed that she “will” return to the stage despite her health battle.
“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. I will,” she shared. “I am Céline 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.”
As she continues to find ways to manage her health, she said she has taught her sons, René-Charles, 23, and twins Nelson and Eddy, 13, whom she shared with late husband René Angélil, what to do in an emergency.
“Don’t be scared if I can’t talk, mom’s not dying. Mom can’t use her vocal cords,” Dion recalled of conversations she’s had with her children. “‘It’s possible I hear you but I cannot communicate.’ They know what to do, call 9-1-1.”
Although those close to her have seen her struggle for years, Dion revealed to the public in December 2022 that she had been diagnosed with a “very rare neurological disorder” called stiff-person syndrome.
“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 to talk about everything that I’ve been going through,” Dion explained in an Instagram video at the time, adding that her illness “affect[s] every aspect of [her] daily life, sometime causing difficulties when [she] walks and not allowing [her] to use [her] vocal cords to sing” the way she is used to.
Dion continued: “I have a great team of doctors working alongside me to help me get better and my precious children, who are supporting me and giving me hope. 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.”
Later that month, a source exclusively told Us Weekly that Dion’s three sons had been her “rock” amid her diagnosis.
“The twins are very mature for their age and René-Charles checks in and dotes on his mom all the time,” the insider noted.
Pierre Suu/Getty Images Céline Dion is sharing her stiff person syndrome battle with the world. The Grammy winner, 56, announced in a January statement that she would “raise awareness” about the “little-known” neurological disorder in a documentary titled I Am: Céline Dion. The announcement came after Dion revealed her diagnosis in December 2022. “I’ve been […]
The source also explained that Dion is “an eternal optimist” and has been “suffering the symptoms for quite some time” before being diagnosed.
“It came as a shock, but she’s lost none of her fighting spirit and is comforted that at least she knows exactly what she’s dealing with now and there’s comfort that she can alleviate some of the symptoms by getting treatments that are specific for this condition,” the source added.
Over a year later, Dion gave a health update and shared that she hadn’t “beat the disease yet” and that it will always be within her.
“I hope that we’ll find a miracle, a way to cure it with scientific research, but for now I have to learn to live with it,” she explained in a May 2024 Vogue France cover story interview. “So that’s me, now with stiff-person syndrome.”
