A strong, supportive community helps those affected by multiple sclerosis (MS) feel empowered — improving the management of the disease.
Like many of the 90,000 Canadians who live with multiple sclerosis (MS), Toronto-based, MS patient Catherine’s initial response when she was diagnosed with the chronic neurological disease in 2010 was one of confusion and denial.
While she had the support of her husband and parents, Catherine felt alone, as if no one could understand the gravity of her invisible — and often unpredictable — symptoms. Although she was presented with resources and an MS community she could turn to, Catherine chose not to go public with her diagnosis out of fear.
This loneliness ultimately took a toll on Catherine’s well-being and mental health. “For years, denial kept me from facing my MS head on. Rather than learning how to live with it, I was ashamed of the disease and hid from it,” she says.
Four years after her diagnosis, Catherine and her husband welcomed their first daughter, Arden. Shortly after, she experienced a relapse of her MS symptoms but chose to put her treatment on hold to expand her family. She welcomed their second child, Grayson, in 2017, which was followed by another relapse. This time, with two young daughters to care for, Catherine prioritized her own health.
“I made the hard decision to stop breastfeeding as I had to take my MS medication a lot sooner than I had intended,” Catherine explains. “I found this hard and spent a lot of time crying alone and feeling tremendous guilt. If I could have talked to someone who had been in my shoes before, I think it would have helped.”
The pain caused by lacking a support system eventually outweighed the discomfort of vulnerability. Catherine knew she needed to heal, which led her to attend local events, such as MS Walk and Burgers to Beat MS. With time, she became comfortable speaking up about her challenges with MS, alongside a community who could truly understand her journey. “I struggled because I didn’t talk about what I was going through for a long time, but everything seems less frightening now that I am,” says Catherine. “My MS is something I accept fully now, and I want to help people understand that there’s nothing to be ashamed of.” On average, 12 Canadians are diagnosed with MS every day.