Céline Dion has recently opened up about her struggle with stiff-person syndrome, a rare neurological disorder, in an exclusive interview with NBC’s Hoda Kotb. The iconic singer revealed that she felt compelled to keep her health issues a secret for a long time, which made her feel like she was “lying” to her fans and loved ones.
Diagnosed in 2022, Dion shared that she initially ignored her symptoms due to her responsibilities as a wife and mother. Her late husband, René Angélil, was battling throat cancer until his death in 2016, and Dion felt the need to be strong for her family. “I did not take the time to figure out my own health concerns. I should have stopped,” she admitted.
The Grammy-winning artist described the impact of stiff-person syndrome on her life and career. The disorder, characterized by progressive muscle stiffness and spasms, has significantly affected her ability to sing. “It’s like somebody is strangling you,” Dion explained, adding that trying to adjust her voice often results in painful spasms.
For years, Dion pushed through her symptoms, feeling the weight of her responsibilities and the need to maintain her public image. “My husband was fighting for his own life. I had to raise my kids. I had to hide. I had to try to be a hero,” she said. The burden of keeping her health issues a secret became too much for her to bear. “Lying to the people who got me where I am today was too much,” she confessed.
Stiff-person syndrome is a rare autoimmune disorder that causes muscle stiffness and spasms, often triggered by environmental factors like sudden movements or loud noises. The condition can severely impact a person’s quality of life, making everyday activities challenging. Dion’s diagnosis has brought attention to this little-known disorder, highlighting the struggles faced by those who live with it.
In a preview clip from her NBC interview, Dion shared that the diagnosis has had a profound impact on her voice. “When I try to make my voice lower or higher, it results in a spasm,” she said. Despite the challenges, Dion remains determined to continue her career. “I’m working hard every day, but I have to admit it’s been a struggle,” she said in the trailer for her upcoming documentary, which will provide a behind-the-scenes look at her health battle.
Dion’s decision to go public with her diagnosis was not easy. For years, she felt isolated and unsure of what was happening to her body. “We did not know what was going on,” she told Kotb. “I did not take the time. I should have stopped, take the time to figure it out.” Her mysterious health struggles coincided with her husband’s battle with cancer, adding to the complexity of her situation.
Ultimately, Dion decided to share her diagnosis with the world in December 2022. She explained how the condition’s muscle spasms impact her singing and daily life, and announced that she would not be able to go on her European tour. The revelation was a significant moment for Dion, who had been keeping her health issues private for so long.
Since going public, Dion has made efforts to raise awareness about stiff-person syndrome. She appeared on the 2024 GRAMMYs stage to present the award for Album of the Year to Taylor Swift, marking her return to the spotlight. She is also set to release a Prime Video docuseries, “I Am: Celine Dion,” which will provide an in-depth look at her journey with the disorder.
In an interview with Vogue France, Dion expressed a sense of optimism about the future. “Today, I’m a woman who is feeling strong and positive about the future. One day at a time,” she said. Her full interview with Kotb for NBC Nightly News is set to air on June 11, providing fans with a deeper understanding of her health battle and her determination to keep moving forward.
Dion’s story is a testament to her resilience and strength. Despite the challenges posed by stiff-person syndrome, she remains committed to her career and her fans. “If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. But I won’t stop,” she said, embodying the spirit of perseverance that has defined her illustrious career.
