Céline Dion is widely celebrated for her powerful vocals and commanding stage presence. However, behind the scenes, the iconic singer has been grappling with a rare and painful autoimmune neurological disorder.
A Brave Revelation
In June 2024, Céline shared her personal journey in a deeply moving documentary. The film captures some of her most heart-wrenching moments, including a particularly distressing medical episode.
Heartbreaking Diagnosis: Stiff Person Syndrome
In December 2022, Céline revealed her diagnosis of Stiff Person Syndrome (SPS), a rare and debilitating neurological disorder characterized by severe muscle stiffness and spasms. The muscle stiffness can be so extreme that some patients are unable to walk, accompanied by symptoms like slurred speech and double vision.
“It’s an illness we know so little about. There are spasms – they’re impossible to control,” explained Claudette Dion, Céline’s sister.
In her June 2024 interview with TODAY’s Hoda Kotb, Céline disclosed that she had been battling this “very difficult, very painful” condition for nearly two decades. The journey to diagnosis was long and arduous, filled with countless tests and treatments before finally identifying the rare disorder.
The Struggle Behind the Spotlight
Despite her health struggles, Céline continued to shine in her career, winning numerous awards and performing at sold-out shows. However, during her Taking Chances world tour, she experienced a distressing episode right before a show in Germany, where she felt something was terribly wrong.
“I was very, very, very scared,” she admitted, but she embraced the “show must go on” attitude and took to the stage. Over time, Céline noticed changes in her voice, describing it as “nasal” and not the powerful voice her fans loved. Her production team made adjustments by lowering the keys of her songs to help her manage.
A Difficult Decision
By 2020, Céline had performed 52 shows during her tour despite her condition. The COVID-19 pandemic offered an unexpected break for rest and recovery. She resumed touring in 2022, but by April of that year, she had to cancel her tour again, citing a “recent health issue” on her website without disclosing the true reason.
Eventually, the burden of hiding her condition became too much. Céline candidly admitted, “I could not do this anymore.” She postponed her 2023 European Courage World Tour, sharing her struggles and hopes for recovery with her fans.
“I’ve been dealing with problems with my health for a long time. It’s been really difficult for me to face these challenges and to talk about everything that I’ve been going through,” she revealed.
A Courageous Reveal
In 2024, Céline returned to the public eye at the premiere of her documentary, “I Am: Celine Dion.” This was her first red carpet appearance since announcing her SPS diagnosis. Radiant in an all-white Dior ensemble, she presented the film alongside her eldest son, René-Charles Angélil.
“This is, by far, the biggest crowd I’ve had in a few years,” she remarked, expressing her gratitude to her fans. “Thank you to all of you from the bottom of my heart for being part of my journey. This movie is my love letter to each of you.”
Raw and Honest
The documentary is raw and intimate, showcasing Céline’s battle with SPS. One particularly “difficult to watch” clip shows her during a severe muscle spasm attack, revealing the devastating effects of the disease.
“Every time something like this happens, it makes you feel so embarrassed,” she admitted. Yet, she felt it was important to share her experience with her fans, insisting that the nearly 10-minute episode remain in the film.
Impact on Family
Céline’s battle with SPS has deeply affected her family. She prepared her two younger sons for her unpredictable episodes, educating them on how to handle her sudden attacks. “Mom’s not dying. Mom cannot use her vocal cords. If I [cannot] respond to you, it’s possible that I hear you, but I cannot communicate,” she told them.
Determination to Perform
Despite her health struggles, Céline is determined to return to the stage. “It didn’t take anything away from me. I’m going to go back onstage, even if I have to crawl. Even if I have to talk with my hands, I will. I will,” she declared.
Céline has undergone various therapies to manage her symptoms and improve her mobility, remaining focused on her goal of performing again. “I am Céline Dion because today my voice will be heard for the first time, not just because I have to, or because I need to. It’s because I want to and I miss it,” she shared.
Céline Dion’s journey with Stiff Person Syndrome is a testament to her unwavering strength and resilience. From her shocking diagnosis to her emotional documentary and the impact on her family, the singer has faced immense challenges with grace and determination. Her story is one of courage, perseverance, and an unyielding love for her fans and her craft.