Céline Dion Reveals Struggle with Stiff Person Syndrome in New Documentary

In the new documentary “I Am: Céline Dion,” which premiered on Prime Video on June 25, the famous singer gives a personal and emotional look into her life with a rare neurological condition. The film, directed by Irene Taylor, includes a scene that Taylor almost didn’t film because it was so intense.

Céline Dion reveals that she has been dealing with stiff person syndrome for 17 years. This autoimmune disorder causes severe muscle stiffness and painful spasms, sometimes leaving her unable to move. One powerful scene at the end of the documentary shows Dion experiencing a severe spasm that turns into a medical emergency.

Director Irene Taylor told the New York Times that Dion allowed her full access to her life and didn’t want any scenes cut or shortened, even the difficult ones.

In the scene, Dion is having a physical therapy session after recording a new song, “Love Again.” She begins to experience cramping in her foot, which quickly spreads to her whole body. Within minutes, she is unable to move, speak, or change her facial expression, contorted in pain.

Taylor described how Dion’s body tensed up dramatically, moaning in pain, and how her physical therapist had to turn her onto her side as her limbs twitched. Dion’s team, worried about her, watched closely. She received a benzodiazepine nasal spray, a drug to reduce anxiety and muscle spasms. The spasms lasted between 30 minutes and an hour before she could speak again.

After the episode, Dion expressed embarrassment over losing control of her body. Her physical therapist suggested that the excitement from singing earlier may have triggered the spasm. Dion wondered aloud how she could ever perform again if a simple recording session could cause such a crisis.

Reflecting on these severe episodes, Dion mentioned that she used to lose control for hours without knowing what happened. She described the struggle of dealing with the condition and her efforts to manage it through physical therapy, medication, and a positive outlook.

Stiff person syndrome causes muscle cramps, spasms, and stiffness, with certain movements or emotions triggering whole-body spasms. These episodes can be extremely painful and panic-inducing.

David Axelrod, a patient with stiff person syndrome, described similar experiences, where severe spasms make him unable to move, sometimes lasting for hours. The pain and anxiety during these episodes are overwhelming.

Céline Dion has made significant progress in managing her symptoms since the documentary was filmed. She continues with physical therapy and medication and is eager to return to the stage, although she acknowledges she might need to cancel shows to prioritize her health. Despite the challenges, Dion remains hopeful about her recovery.