Celine Dion Shares Intense Footage of Painful Health Episode

Celine Dion has allowed the world to witness her struggle with stiff-person syndrome, a rare neurological disorder that has significantly impacted her life and career. The raw footage, featured in the newly released Prime Video documentary I Am: Celine Dion, captures the 56-year-old star enduring a severe spasm during a physical therapy session, offering an unfiltered look at the challenges she faces daily.

The documentary, which debuted on Tuesday, chronicles Dion’s journey with a condition she first disclosed publicly in December 2022. In a particularly poignant scene, viewers observe Dion lying on her side on a therapy table, suddenly freezing as a spasm takes hold. The camera unflinchingly records her distress as she begins to shake slightly, whimpering in pain and shedding tears.

This frank portrayal of Dion’s health struggles was a deliberate choice by the singer herself. Director Irene Taylor shared with the Los Angeles Times that when shown a rough cut of the film six months after the incident, Dion insisted, “Don’t cut down that scene.”

The documentary reveals that Dion has been grappling with symptoms of stiff-person syndrome for 17 years, far longer than the public had been aware. This rare autoimmune and neurological condition affects approximately one or two individuals out of every million and is characterized by stiffening in the torso and limbs, along with severe muscle spasm episodes.

Dr. Amanda Piquet, Dion’s physician and the director of the autoimmune neurology program at the University of Colorado Anschutz Medical Campus, explained to TODAY.com that the spasm began in Dion’s foot before rapidly escalating to consume her entire body. “That anxiety, that panic, that continued spasm that was not breaking then very quickly triggered just a complete whole body spasm,” Dr. Piquet said.

The footage shows the medical team’s response, administering a nasal spray containing benzodiazepine, a depressant drug used to alleviate anxiety and reduce muscle spasms. Dr. Piquet emphasized that while intense, the episode was not a seizure, clarifying, “This is a spasm that is occurring, and patients are aware of what’s going on. There’s a lot of anxiety, there’s a lot of panic, your adrenaline’s rushing.”

Further demonstrating Dion’s vulnerability, she said following the spasm: “Every time something like this happens, it makes you feel so embarrassed. So like, I don’t know how to express it … like to not have control of yourself.”

Taylor initially approached the project with some reservations, concerned about portraying a public figure with a carefully cultivated image. However, she found Dion to be authentic and open. “I realized that, instead of [her celebrity] being something to be wary of, it actually was working in my favor, but only because she had decided, ‘I have nowhere else to go,’” Taylor told the L.A. Times.

Taylor’s approach to filming the difficult moments was one of respectful observation. During the intense spasm scene, she focused on ensuring Dion’s well-being while continuing to document the experience. “I thought to myself, ‘I gotta make sure this woman’s breathing,’ so I just pushed my headphones into my ear, and I listened, and I could not hear her breathing. I asked, ‘Is she breathing?’ She was able to squeeze [the therapist’s] hand,” Taylor recounted.

Despite the challenges posed by her condition, Dion remains focused on her future in music and her role as an advocate for those with stiff-person syndrome. Taylor noted, “She finds so much joy in making music that she is going to come out with something on the other side of this that is going to be very powerful. It may not be the Celine Dion that hit the money notes and basically does three aerobics classes during a concert. It might be a different intensity, it might be a different artistic approach, it might be a different way of performing.”

The release of I Am: Celine Dion was marked by a rare public appearance by the singer at Lincoln Center, where she introduced the documentary. Dion addressed the audience, saying, per the L.A. Times, “I cannot believe how fortunate I am to have my fans in my life. Thank you to all of you from the bottom of my heart for being a part of my journey. This movie is my love letter to each of you. I hope to see you all again very soon.”