Back in 2022, singer Celine Dion was diagnosed with a very rare and incurable illness called Stiff Person Syndrome. Since it is so rare, many people don’t really know what it’s like to live life with this syndrome. Now, Dion is opening up about what life is like for her and why she stopped touring.

Dion recently sat down with Hoda Kotb for a Primetime interview that was also previewed on the TODAY show. In the preview, Dion shares that “it’s like somebody is strangling you.” That’s how she describes the muscle spams that she sometimes has in her throat. She added that it’s “like someone is pushing your larynx.”

Her throat is not the only place she has these horrible muscle spams. She explained that “it can also be in the abdominal [area], in the spine, in the ribs.” She also shared that she sometimes gets spams in her hands when she’s cooking, where her fingers get stuck in a certain position, and she can’t unlock them or move them.

The muscle spams Dion experiences aren’t just uncomfortable or inconvenient. The spasms are so strong that they have actually broken her ribs.

Watch the video below to hear more of what Dion told Kotb about what it’s like living with Stiff Person Syndrome.

As Kotb mentioned in the interview, Dion is doing everything she can to treat Stiff Person Syndrome. Back in April, Dion told Vogue France, “I haven’t beat the disease, as it’s still within me and always will be. 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.”

Dion also shared what treatment looks like for her at the moment. She said, “Five days a week I undergo athletic, physical and vocal therapy. I work on my toes, my knees, my calves, my fingers, my singing, my voice.”

While her body hasn’t healed, she shared that she has somewhat come to terms with what she’s fighting. She said, “I have to learn to live with it now and stop questioning myself. At the beginning I would ask myself: why me? How did this happen? What have I done? Is this my fault?” 

Now, her outlook is different. She explained, “Life doesn’t give you any answers. You just have to live it! I have this illness for some unknown reason. 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. I’ve chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best I can be.”