Canada has one of the highest rates of multiple sclerosis (MS) in the world, with an estimated 90,000 Canadians, or about one in 400, living with this chronic autoimmune disease of the central nervous system. But despite its prevalence, MS doesn’t look the same for everyone, a reality that can be a challenge to understand.

It’s a feeling that Sophie Berriault knows all too well. The Gatineau, Quebec, native had a flourishing career in music-artist management and booking when in 2015 she learned she had relapsing-remitting multiple sclerosis (RRMS), the most common form of MS. It all came as a complete shock. “My mind naturally went to the darkest place in terms of the potential impact on my life,” says Berriault. “The word ‘limits’ had never been in my vocabulary.”

Depending on what part of the central nervous system is affected, MS can come with a myriad of physical, cognitive and emotional symptoms: extreme fatigue, mobility issues, vision problems, memory impairment, dizziness and mood changes among many others. Since each MS diagnosis and experience is so unique, it’s important to take note of your own symptoms over time; changes might be a sign of disease progression.

After taking the necessary time to grieve her diagnosis and “really feel the emotions,” says Berriault, she resolutely decided that she was going to live with MS her way. “You can set your own rules and try to make a conscious decision each day to stay positive,” she explains. It meant shelving her round-the-clock career to accommodate a more self-care focused way of life, always staying connected to her body and well-being and being radically honest with herself and her friends. She started exercising more and focusing on her overall health and even took up cycling.

Photo credit: Igraph Media

Through it all, Berriault has learned that you can’t go on this journey alone and has put her communication skills to work supporting others. In addition to shifting her career, she has become an advocate and leader through her social platform PS j’ai la SP and sits on the MS Society of Canada’s Young Adults Committee. She also hosts fundraising events designed for young people with MS, whom she says often feel invisible.

Berriault also makes a point of tracking her symptoms, recognizing where she might need to make modifications in her day or week to feel her best, and stays in close contact with her healthcare team as changes may be a sign her disease is progressing. She’s also an ambassador for the My MS, My Rules campaign, an online platform offering information about MS and its symptoms, in addition to a symptom-tracking tool.

The Your MS Questionnaire lets you confidentially note the particular symptoms you’ve been experiencing over a period of time. ​​As Berriault says, “Accepting these changes is not always easy, but it gives you a feeling of more control.”

Though researchers are narrowing in on what causes MS, there is currently no cure—but that’s not stopping Berriault. She’s committed to staying positive and to her work raising awareness around the disease while empowering those living with MS to find support from people like her who are on a similar journey. “Now, I focus and act on what I can control rather than dwell on what I cannot,” she says. “For me, it’s a constant decision to be present and in the ‘now.’ I’m still dancing and living life without regrets.”

Visit MyRules.ca to learn more about MS symptoms and read more about Sophie and other inspiring Canadians challenging what it means to live with MS.

ELLE created this content with sponsorship by Novartis Pharmaceuticals Canada Inc.