People living with MS standing in front of a Canada map

Slipping Through The Cracks: My Invisible Disease in the Workplace

“I find people have a preconceived notion that if you can work full-time, you surely can’t be that bad. Because multiple sclerosis can be episodic and invisible, people sometimes don’t understand. They don’t know that I’m mustering everything I have to keep going. They’ve never felt the dead-to-the-bone fatigue that makes even thinking challenging,” says Gwen. 

Gwen, a Geoscience Information Officer with the New Brunswick Department of Natural Resources and Energy Development, was diagnosed with multiple sclerosis (MS) in 2008 at the age of 32. She works full-time while caring for a spouse with Parkinson’s disease, raising three children, and balancing the weight of being the primary income earner. 

MS is considered an episodic disability, meaning that the severity and duration of illness and disability can vary and are often followed by periods of wellness. The uncertainty of life with an episodic disability can be the most draining aspect – the inability to plan for the future, as well as the impact on one’s social life and career. MS creates serious physical, mental, emotional and financial challenges for tens of thousands of Canadians and their families. People with MS want to work, but it can be challenging to do so.  

Not knowing when flare ups of symptoms may strike and how long they will last for makes maintaining employment difficult. In fact, 60 per cent of those living with MS eventually enter unemployment, though this isn’t always related to lack of workplace accommodations or supportive management. For many people, the supports to assist those with episodic disabilities in the workplace, such as the Employment Insurance (EI) sickness benefit, don’t allow for the flexibility needed to accommodate them. The current EI sickness benefit period of 15 weeks is not adequate for many Canadians. The MS Society of Canada is advocating for the extension of the EI sickness benefit period to at least 26 weeks. Too many Canadian with episodic disabilities are slipping through the cracks, unable to access the safety net meant to support them. 

Gwen with her husband, Neal, and son, Marrok.

“If the EI sickness benefit was longer than 15 weeks, it would enable me to take that time off  without worrying about the financial ramifications. I am the main breadwinner in my family, I have to work or have an alternative. I tend to use a lot of sick time as I am frequently ill,” says Gwen.  

“The attitude for assistance is that if I work full-time, I must not need additional supports, but the truth is we pay so much for medications and therapies that we are bleeding financially. My husband also lives with a disability, which makes our situation doubly stressful. We are left at the mercy of others, and that weighs on us heavily. I need help.” 

It’s time for our federal government to #TakeActionForMS by extending the EI sickness benefit period from 15 week to at least 26 weeks. The #TakeActionForMS campaign calls on the federal government to address these gaps in our support system. Join the campaign and #TakeActionForMS today.

Interested in the impacts of the EI Sickness Benefit policy framework on the lives of Canadians? Read the 2019 Multi-Stakeholder Round Table Report. The report a guiding light for government policy-making; a consensus of what is needed to improve the Employment Insurance sickness benefit, packaged into 10 key recommendations. One of these recommendations supports the #TakeActionForMS campaign’s calls to extend the benefit to at least 26 weeks.

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