You wouldn’t necessarily know it by looking at them, but on average 11 Canadians are diagnosed with multiple sclerosis (MS) every day.
For many, early symptoms are nearly invisible – fatigue, weakness, lack of coordination, vision or bladder problems. Symptoms are often overlooked by even those living with early stages of the disease. Symptoms can also be overlooked by unsuspecting friends, family or colleagues, even after diagnosis which, in some cases, can take years.
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Today is World MS Day and this year we’re asking Canadians to take a moment to think about the invisible symptoms of MS and the unseen impact MS can have on a person’s quality of life.
Many individuals affected by MS battle invisible symptoms, including challenges with mental health, numbness, dizziness, weather sensitivity, vision loss, debilitating fatigue and more.
Chances are, they are also living with the stigma of having MS symptoms and wrong assumptions about them. They are often mistaken for being lazy, clumsy or even impaired. Just because someone looks okay on the outside doesn’t mean they aren’t struggling on the inside.
MS is an unpredictable and often disabling disease of the central nervous system. One day your body behaves ordinarily, the next it refuses to listen to you.
There’s no warning. There’s no sign that something has changed from one day to the next, making it difficult for people living without the disease to understand swings in a person’s physical or mental health. The unpredictable and episodic yet progressive nature of MS makes it challenging to maintain financial security and navigate health and community support systems including access to treatments, care, and appropriate housing.
Employment is a key factor in maintaining financial security. The average unemployment rate for people living with MS is 60 percent. People with MS want to work and struggle to continue to work, often because of issues related to lack of flexibility and accommodation.
Fortunately, we’ve come a long way in the last 20 years thanks to the generosity of donors who contributed to help fund critical MS research. In 1998, there were only three types of MS treatments available. Today there are 14 disease modifying therapies approved in Canada for people with relapsing forms of MS to consider as part of their treatment and management of MS.
In the 1990s, a woman living with MS (women are three times more likely to be diagnosed with MS than men) would have had no treatment options and been advised not to have a family, not to work or do any strenuous activity.
She would have felt very insecure because her disease was invisible and not understood by employers, and she would have lived in fear of it getting worse and being alone. Today, a woman living with MS has multiple treatment options, may be told it is ok to continue to work and have a family if she chooses. We’ve come a long way in MS awareness and treatment, but we have a long way still to go.
Over 77,000 Canadians are currently living with MS, one of the highest rates in the world. Let’s work collectively to eradicate stigma around MS and make it easier for individuals affected by the disease to share their stories and experiences with the world.
Tania Vrionis is the President, Alberta & Northwest Territories and BC & Yukon Divisions of the MS Society of Canada.
