Céline Dion Took Valium During Battle With Stiff Person Syndrome

Céline Dion is opening up more and more about her battle with Stiff Person Syndrome (SPS) ahead of the release of her documentary, I Am: Céline Dion. The five-time Grammy winner spoke recently with People and NBC News‘ Hoda Kotb about the lengths she went to to manage her condition, including taking large doses of Valium to get through grueling performances.

Dion told People that she first felt a muscle spasm caused by SPS 17 years ago, while on tour in Germany. “I had breakfast, and I suddenly started to feel a spasm,” she told the publication, recalling that her vocal exercises “made it worse.” Muscle spasms and rigidity in the trunk are both a common symptoms of the disease, which affects the central nervous system and specifically the brain and spinal cord, per the National Institute of Neurological Disorders and Stroke.

For Dion, the progressive symptoms made it difficult to sing. When she tried, her stiff muscles made it feel “like somebody is strangling you,” she told Kotb. “I have broken ribs at one point because sometimes when it’s very severe, it can break some ribs as well.”

As the singer sought solutions to her worsening symptoms, she was advised to try prescription medications, including Valium, a muscle relaxer.

“We started with two milligrams to see if it would help,” Dion told People. “And then 2.5, and then 3, and 15 and 50.” The medication wore off quickly, though, causing Dion to take higher and higher doses. At one point, she got up to 90 milligrams in order to make it through a performance.

“It could have been fatal,” Dion reflected. “I did not question the level because I don’t know medicine. I thought it was going to be OK… I did not understand that I could have gone to bed and stopped breathing.”

Dion told Kotb that she eventually cut back on Valium when the pandemic began in 2020 and her performance schedule let up. “I stopped everything with the help of doctors, because when you taper these drugs… you can die as well,” she said. “You cannot just, like, stop everything.” However, her symptoms worsened without the medications. It wasn’t until August 2022 that she was diagnosed with SPS, and she shared her diagnosis in an emotional social media video later that year.

Dion has pledged to return to performing when she’s able, and has formulated an intense treatment plan to make that happen, including medication, immune therapy, vocal therapy, and physical rehab. It’s a lot, but Dion is approaching it with a positive attitude. As she told People, “I love doing all these things.” And as a single mom of three after her husband René Angélil’s death in 2016, Dion is determined to be as present and possible as possible for her sons.

She’s also embracing her role as an advocate for others with debilitating conditions like SPS, including sharing a health update earlier this year in honor of SPS Awareness Day. “This last couple of years has been such a challenge for me,” she wrote at the time, “the journey from discovering my condition to learning how to live with and manage it, but not to let it define me… I want to send my encouragement and support to all those around the world that have been affected by SPS.”

Now, Dion told People, she’s found strength through opening up. “[M]y home would have become a prison, and I would have become a prisoner of my own life” if she’d kept the diagnosis secret, Dion explained. Being honest with her fans has helped her find gratitude and joy. “The fact that I found the strength to communicate my condition with the world makes me very proud,” she said. “Maybe my purpose in this life is to help others, and that is the greatest gift.”

Before you go, read about more stars living with rare or chronic health conditions: