Céline Dion has opened up about her health in a candid interview, marking her first public discussion since being diagnosed with stiff person syndrome. The legendary singer, who has been absent from the stage since 2020, sat down with TODAY’s Hoda Kotb for an exclusive primetime special that aired on June 11.
During the interview, Dion shared her experiences of singing while battling stiff person syndrome, a rare neurological disorder. She explained why she chose to go public with her diagnosis and discussed the possibility of returning to the stage. Dion revealed that she often had to “lie” to her audience during tours to mask her struggles. “I was trying to survive,” she admitted. “I let the people sing with me a lot.”
She also spoke about relying on high doses of Valium to manage severe muscle contractions during performances. “Trying a lot of things when you don’t know what you have can kill you. No bueno. Not nice. But I was trying. We were trying,” she said.
Fans will get an even deeper look into her life and illness in her upcoming documentary “I Am: Celine Dion,” set to stream on Prime Video starting June 25.
Since announcing her diagnosis in December 2022, Dion has provided occasional health updates. In her recent interview, she expressed optimism about her future. “My voice is getting stronger,” she told Hoda, adding that she believes she will be healthy enough to return to the stage soon, though she did not specify when. “I believe in myself, in my bravery,” she said.
Despite the challenges, Dion is determined not to let the disease control her life. “I’m going to come onstage because I’m ready. And my vocal cords will not scare me because I’m going to be ready, and I’m going to hit those notes,” she declared.
In a previous interview with Vogue, Dion mentioned that her “happiness has come back” since revealing her diagnosis. “It has been a big burden on my shoulders, and a lot of that weight’s gone … because now I can just focus on reality. That’s wonderful,” she said.
She has been undergoing vocal, physical, and athletic therapy five days a week to manage her condition. In March, she was photographed in New York City, appearing well and giving a thumbs-up to the camera. In February, she received a standing ovation at the 2024 Grammys, where she presented the last award of the night. “When I say, I’m happy to be here, I really mean it from my heart,” she said.
Stiff person syndrome is a progressive neurological disorder with autoimmune features. It causes muscle stiffness and heightened sensitivity to noise, touch, and emotional stress, leading to painful muscle spasms. The condition can severely impact quality of life, causing difficulties in movement and increasing the risk of falls.
Dr. Desimir Mijatovic, a pain medicine specialist, explained that the condition can make it very difficult for someone like Dion to perform. “Those muscles are prone to spasm or tightening up, and I’m sure it can affect the way that she sings and performs,” he said.
Dr. Scott Newsome, director of the Stiff Person Syndrome Center at Johns Hopkins Medicine, described it as a “devastating disease.” He noted that it often takes about seven years for people to get diagnosed due to its rarity and the way it mimics other conditions.
There is no cure for stiff person syndrome, but symptoms can be managed with medication and various therapies. Patients often experience muscle stiffness and spasms, which can be triggered by common sounds or stressful situations.
Dion’s journey with stiff person syndrome began in 2008 when she first noticed symptoms while on tour in Germany. Over the years, she experienced muscle spasms, balance issues, and trouble walking. Despite these challenges, she continued to perform, relying on high doses of Valium to manage her symptoms.
In December 2022, Dion publicly shared her diagnosis, explaining that the spasms affected every aspect of her daily life. “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,” she said.
When asked about performing again, Dion told Hoda, “I’m going to go back onstage, even if I have to crawl. Even if I have to talk with my hands, I will … not just because I have to, or because I need to. It’s because I want to and I miss it.”
While she did not provide a specific timeline for her return, Dion remains hopeful. In a March Instagram post for Stiff Person Syndrome Awareness Day, she wrote, “I remain determined to one day get back onto the stage and to live as normal of a life as possible.”
As she continues her journey, Dion is focused on her health and well-being. She has chosen to work with a medical team and undergo various therapies to manage her condition. “I want to be the best I can be,” she said. “My goal is to see the Eiffel Tower again!”
In her recent interview, Dion gave an in-depth look at her journey with stiff person syndrome, from her earliest symptoms to her ongoing treatments. Despite the challenges, she remains determined to return to the stage and continue doing what she loves most: singing.
