Celine Dion Diagnosed With Stiff-Person Syndrome

As radio stations play holiday music on repeat, listeners will likely hear Celine Dion. The singer has covered numerous Christmas classics. Dion has made a name for herself as a prolific performer, and she surprised fans when she announced that she would have to postpone shows that were scheduled for 2023.

The musician has been diagnosed with a chronic, incurable disease called stiff-person syndrome (SPS). SPS is an autoimmune condition that impacts the brain and spinal cord. According to the National Institute of Neurological Disorders and Stoke, “People with SPS may develop abnormal, often hunched over postures. Some people may be too disabled to walk or move. Many fall frequently because they do not have the normal reflexes to catch themselves.”

The symptoms of SPS can be difficult for performers like Dion to navigate. Patients with SPS might become more sensitive to loud noises or bright lights, which might trigger muscle spasms. Because of this sensory sensitivity, many patients hesitate to go out in public. Dancing and singing onstage could result in dangerous complications like falls or accidents.

“We now know this is what’s been causing all of the spasms that I’ve been having,” Dion said in a video announcement on her Instagram. “I always give 100% when I do my shows, but my condition is not allowing me to give you that right now,” she explained.

Stiff-person syndrome is often misdiagnosed as Parkinson’s or fibromyalgia, so medical researchers are unsure about how many people actually have the disease. John Hopkins reports that only 1 or 2 in a million people are diagnosed with SPS. Patients and healthcare professionals still have many questions about the condition. For example, why are twice as many women diagnosed with SPS than are men? And do gender biases lead doctors to underestimate these women’s SPS symptoms as anxiety or psychosomatic disorders?

“I have to admit it’s been a struggle,” Dion said as she reflected on her career and expressed uncertainty about her future. “All I know is that singing is what I’ve done all my life and it’s what I love to do the most.”

Dion’s diagnosis raises awareness about SPS and about inaccessibility in entertainment for performers and patrons alike.

While SPS is rare, countless people struggle with mobility issues and sensory sensitivity. Some music venues include low-sensory stages with quieter stereo systems and soft lighting. The organization Accessible Festivals partners with venues to advocate for disability-friendly concerts and festivals. Austin Whitney was inspired to create Accessible Festivals when he attended a music festival six months after he had a car accident. The accident severed his spinal cord, and Whitney was learning how to use a wheelchair. “For the first time since his spinal cord injury, [Whitney] was able to smile and simply enjoy life … [but Whitney realized] how much better of an experience he could have had with the proper accommodations,” the Accessible Festivals team recounts on their website.

Professional entertainers spend hours rehearsing high-intensity choreography and traveling for tours. Musicians are four times more likely to experience hearing loss when they are regularly exposed to loud stereo systems. Entertainers like Dion may feel forced to exit the industry if they cannot safely work in these conditions. Accessible Festivals has partnered with RAMPD, an organization that advocates for disabled professional musicians. Gaelynn Lea, who co-founded RAMPD, told The New York Times that her disability is a vital part of her music: “Disability isn’t ‘despite this, they did this.’ It’s more like, ‘because of their identity as a disabled artist, you are enjoying this art in this form.’”

As artists like Celine Dion navigate chronic illnesses, groups like RAMPD and Accessible Festivals hope for a future where disability is normalized and welcomed in the entertainment industry.