Céline Dion has recently shared her experiences living with the rare neurological condition known as stiff person syndrome (SPS). In a candid interview with Vogue France, the Canadian singer expressed her determination to keep moving forward despite the challenges posed by the illness. “Nothing is going to stop me,” she declared, emphasizing her commitment to taking life one day at a time.
Dion, who has been a beloved figure in the music industry for decades, revealed that managing SPS requires a significant amount of effort. She spends five days a week undergoing various forms of therapy, including athletic, physical, and vocal exercises. “I work on my toes, my knees, my calves, my fingers, my singing, my voice,” she explained. This rigorous routine is part of her strategy to adapt to her new reality and maintain her health.
Stiff person syndrome is a rare condition characterized by muscle rigidity and spasms, heightened sensitivity to stimuli such as sound and light, and emotional distress that can trigger muscle spasms. According to the National Institute of Neurological Disorders and Stroke, these symptoms can severely impact a person’s quality of life. Dion first announced her diagnosis in December 2022, stating that she would be taking a break from her professional commitments to focus on her health. Since then, she has ceased touring and live performances.
In her interview, Dion admitted that she initially struggled with accepting her diagnosis. “At the beginning, I would ask myself: ‘Why me? How did this happen? What have I done? Is this my fault?'” she said. However, over time, her perspective has shifted. “Life doesn’t give you any answers. You just have to live it,” she remarked, highlighting her resolve to face the condition head-on.
Dion’s approach to her illness is one of resilience and determination. “I have two choices. Either I train like an athlete and work super hard, or I switch off and it’s over,” she stated. She has chosen the former, dedicating herself to working with a medical team to be the best she can be. Her ultimate goal is to see the Eiffel Tower again, a symbol of her enduring hope and ambition.
The support of her loved ones and fans, along with top-notch medical care, has been instrumental in her journey. “People who suffer from SPS may not be lucky enough or have the means to have good doctors and good treatments. I have those means, and this is a gift,” she acknowledged. Despite the uncertainty surrounding her future in live performances, Dion remains optimistic. “As things stand, I can’t stand here and say to you: ‘Yes, in four months.’ I don’t know… My body will tell me,” she said.
Dion’s story will be further explored in an upcoming documentary titled “I Am: Celine Dion,” set to stream on Prime Video later this year. The film promises to offer an intimate look at her journey towards living an open and authentic life amidst her illness.
In a recent interview with TODAY’s Hoda Kotb, Dion elaborated on how singing with SPS feels and why she decided to go public with her diagnosis. She recalled the difficulties she faced on tour, often having to rely on high doses of Valium to manage her severe muscle contractions. “I was trying to survive,” she admitted, revealing that she would let the audience sing along with her to cover up her struggles.
Despite the challenges, Dion’s voice is getting stronger, and she believes she will be healthy enough to return to the stage in the near future. “I believe in myself, in my bravery,” she said, though she acknowledged that she might still need to cancel performances occasionally. “I know that I have a good team right now (who will say), ‘No show tonight.’ It’s going to be hard. It will probably happen.”
Dion’s determination to not let SPS control her life is evident. “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 asserted. Her happiness has returned since publicly revealing her diagnosis, allowing her to focus on reality and move forward.
Stiff person syndrome is a progressive neurological disorder with features of an autoimmune disease. It causes muscle stiffness and spasms, heightened sensitivity to noise, touch, and emotional stress, which can trigger painful muscle spasms. The condition is rare, affecting only one or two people in a million, and can severely impact a person’s quality of life.
Dion’s journey with SPS has been long and challenging. She first noticed symptoms in 2008 while on tour in Germany. Over the years, she has faced numerous health issues, including severe muscle spasms, balance problems, and difficulty walking. Despite these challenges, she remains hopeful and determined to return to the stage.
In December 2022, Dion publicly shared her diagnosis, explaining that the spasms affect every aspect of her daily life, including her ability to sing. She has been working hard with her medical team to build back her strength and ability to perform. While she has not set a specific timeline for her return, she remains committed to her passion for singing and performing.
Dion’s story is one of resilience, determination, and hope. Despite the challenges posed by SPS, she continues to work hard and remain optimistic about her future. Her journey serves as an inspiration to many, showing that even in the face of adversity, it is possible to find strength and continue pursuing one’s dreams.
