Celine Dion ‘Wasn’t Always on Board’ With Sharing Her Stiff-Person Syndrome Diagnosis With Fans

Nearly 20 years ago, Celine Dion felt an odd sensation in her throat and wondered if she was coming down with a cold. As time went on, more unusual symptoms appeared. She struggled to control her singing voice, her vision blurred, and she had shortness of breath. In the most terrifying moments, her body stiffened as she experienced painful muscle spasms.

In a new documentary, I Am: Celine Dion, the international superstar shares what it’s like to suffer from stiff-person syndrome. “I have to learn to live with it now and stop questioning myself,” says Celine, 56, who is currently treating her symptoms with non-pharmacological medication, immune therapy, vocal therapy and exercise. “I have two choices. Either I train like an athlete and work super hard,” she says, “or I switch off and it’s over.”

Finding therapy that works has been tricky because only two in 100,000 people will come down with this little-understood condition. For a time, Celine was taking high doses of Valium to control the spasms. “I did not know, honestly, that it could kill me,” says Celine, who took as much as 90 milligrams at a time. “She’d take more pills because they weren’t working anymore,” a friend explains exclusively to Closer. “But with the help of doctors, she weaned herself off the drug.”

Celine’s Heart Goes on Amid Her Health Crisis

Fortunately, the Canada-born performer has always been a fighter and an optimist. She’s also surrounded by people who love her — most notably her sons, René-Charles, 23, and 13-year-old twins Nelson and Eddy. Celine has assured her sons that no matter how frightening an attack can look, SPS can’t kill her. “The children see her suffering, and of course it pains them, but she’s very open with them,” says the friend.

Her therapist explained to the boys how to recognize an emergency and how to respond. “We have panic buttons in the house,” says Celine, who feels doubly grateful to have such dependable sons. “This is our life now: We care for each other.”

Celine also derives strength from the memory of her late husband, the boys’ father René Angélil, who died in 2016 from throat cancer. “He’s still my husband,” says Celine. “When we travel to see my doctors, I always bring pictures.”

Most of all, Celine’s desire to get back onstage before her beloved audience gives her the power to keep fighting. She vows that she will return to live performing someday, “even if have to crawl. Even if I have to talk with my hands.”

Celine is relieved she no longer has to hide her illness. “She wasn’t always on board with going public,” confides the friend. “But when she realized it wasn’t getting better, she decided she owed an explanation to her fans.”

Coming out with her diagnosis in 2022 and allowing a documentary crew to record her daily struggles were steps she’s taken to reclaim control of her life. Celine admits she’s “very proud” and hopes that her difficult journey will help others. “I believe in myself, in my bravery,” she says. “I’m working very hard, and tomorrow will be even harder. But there’s one thing that will never stop, and that’s the will. It’s the passion. It’s the dream. It’s the determination.”