It’s been nearly a decade since Celine Dion started to notice something was wrong.
Now, the legendary singer has been diagnosed with stiff person syndrome; a rare neurological disorder that has affected her ability to walk, talk, and her ability to sing.
“It feels like somebody is strangling you,” Dion told Today’s Hoda Kotb in a sneak peak of the eye-opening interview set to air on June 11.
She describes it has if someone is pushing on her larynx and pharynx. Dion admitted that it’s seriously affected her ability to sing, admitting it restricts her vocal range.
“It gets into a spasm,” Dion continued to explain. “It started [in the throat].”
“No, okay, it’s gonna be fine,” Dion thought. “But it can also be the abdominal, can be in the spine, can be in the ribs. But it feels like if I point my feet they will stay. Or if I cook, because I love to cook, my fingers, my hands will get in a position. It’s cramping, but it’s like you’re in a position where you cannot unlock them.”
In fact, Dion reveals that she can experience such extreme spasms that her bones break under the pressure.
“You spasm so hard that it can break a rib?” Kotb asked. “Mhmm, yeah,” Celine responded.
As Kotb explained, before her diagnosis, Celine felt like she was going crazy because she had been to so many doctors before they were able to figure out what was wrong.
Now, Celine Dion continues to battle through it.
“It’s chronic and it’s progressive,” Kotb revealed. “But there are medicines to manage it.”
Dion still doesn’t know when or if she will be able to return to the stage, but she refuses to give up fighting. “She’s on the fight of her life right now,” Kotb admits, “and it was on full display.”
In an interview with Vogue France back in April, Dion admitted she’s “well, but it’s a lot of work,” adding that she’s “taking it one day at a time.”
“Life doesn’t give you any answers. You just have to live it! I have this illness for some unknown reason,” Dion told Vogue France. “The way I see it, I have two choices. Either I train like an athlete and work super hard, or I switch off and it’s over, I stay at home, listen to my songs, stand in front of my mirror and sing to myself.”