Céline Dion is commonly known for commanding the stage with her incredible vocals. However, behind the scenes, the singer has been struggling with a rare and painful autoimmune neurological disorder.
In June 2024, she bravely shared her journey in a deeply personal documentary. Snaps capture one of the documentary’s most heart-wrenching moments — the singer suffering a hard-to-watch medical episode.
Céline Dion’s Heartbreaking Diagnosis
In December 2022, the world was shocked when Céline announced she had been diagnosed with Stiff Person Syndrome (SPS), a rare and debilitating neurological disorder. This rare disorder is characterized by severe muscle stiffness and spasms.
Other symptoms include slurred speech and double vision. Sometimes the muscle stiffness can be so extreme that some patients cannot walk. These symptoms are unpredictable and intense, making the condition hard to manage and live with.
“It’s an illness we know so little about. There are spasms – they’re impossible to control. You know how people often jump up in the night because of a cramp in the leg or the calf? It’s a bit like that but in all muscles. There’s little we can do to support her, to alleviate her pain,” Claudette Dion, Céline’s sister, shared.
In June 2024, Céline sat down with TODAY’s Hoda Kotb for an intimate and emotional conversation. It was her first broadcast interview since being diagnosed with SPS. In this interview, Céline revealed she had been battling this “very difficult, very painful” condition for almost 20 years.
Céline Dion opening up about her journey with Stiff Person Syndrome. | Source: TODAY
For years, doctors were at a loss and could not pinpoint her health issues. This struggle for a diagnosis lasted over ten years, filled with countless tests, treatments, and a relentless search for answers. Finally, Céline was diagnosed with the rare autoimmune neurological disorder.
Despite her health struggles, Céline has continued to thrive in her career over the years. She has won numerous awards and sold out countless shows. However, during her Taking Chances world tour, Céline experienced a particularly distressing moment.
Right before a show in Germany, she panicked, feeling something was wrong. “I was very, very, very scared,” she admitted. Despite this, she took to the stage, embracing her iconic “the show must go on” attitude.
However, Céline soon realized her voice was not the same. She described her voice as sounding “nasal” and not like the version of herself that her fans had come to love. To cope with these changes, her production team made adjustments by lowering the keys of her songs. This allowed her to project her voice without straining too much.
Céline Dion’s Courageous Reveal in “I Am: Celine Dion”
In 2024, Céline made a grand return to the public eye by attending the premiere of her deeply personal documentary, “I Am: Celine Dion.” This was her first red carpet-appearance since she announced her diagnosis with SPS.
Céline was in good spirits, radiating elegance in an all-white Dior ensemble, which included a silk skirt paired with a matching blouse featuring a tie-neck. As she presented the film, her emotions were clear.
Céline Dion at the screening of “I Am: Celine Dion” on June 17, 2024, in New York City. | Source: Getty Images
Accompanying her on the red carpet was her eldest son, René-Charles Angélil, who looked dashing in a classic suit. “This is, by far, the biggest crowd I’ve had in a few years,” she remarked after taking the stage at the premiere.
“I miss that,” she confessed to her audience, her voice tinged with emotion. She expressed her profound gratitude, saying, “I cannot believe how fortunate I am to have my fans in my life. Thank you. 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.”
Céline’s documentary was raw and intimate, showing her battle with SPS. Leading up to the premiere, she had been sharing glimpses of her documentary through an official trailer and sneak peeks. Among these clips, one stood out for its raw, painful honesty.
The “difficult to watch” clip captured the singer during a severe muscle spasm attack. Céline was at her doctor for a routine check-up when she suddenly had a health episode. The scene is heartbreaking as she is briefly paralyzed, shedding tears of pain.
Céline Dion suffering from a health episode. | Source: YouTube/ Access Hollywood
Céline revealed that sometimes her spasms are so severe that she can break a rib. The vulnerability and honesty in this clip were difficult to watch. “Every time something like this happens, it makes you feel so embarrassed,” she admitted.
Céline Dion being treated following a scary health episode. | Source: YouTube/ Access Hollywood
Yet, it was important for her to share. Céline was adamant that this nearly 10-minute-long episode was not left on the editing room floor. She wanted her fans to see first-hand the devastating effects of the disease.
During her interview with Hoda, Céline was asked if she ever wondered, “Why me?” Her response was filled with grace and wisdom. “I could have gone that route,” she acknowledged. “What is it going to do for me to question life and say ‘why me’ instead of living my life?”
The Toll of Stiff Person Syndrome on Céline Dion’s Family
Céline’s battle with SPS has not only affected her professional life but has also deeply impacted her family. One of the saddest parts of her condition is the unpredictability of her episodes, which made it necessary for Céline to prepare her two younger sons.
Céline shares her twins and eldest son with her late husband of more than two decades, René Angélil. The singer revealed that she had educated her sons on how to handle her sudden attacks.
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