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.

  1. Avatar

    Good info

  2. Avatar

    My daughters in law have me. Does it pass to my grandchildren.

    • Avatar
      Amy Baldwin

      Hi John,

      Thanks for your question. MS is not directly inherited. The general population in
      North America runs about a 0.1-0.3% risk of developing
      MS. When a parent has MS, the risk of the child and
      siblings developing MS is small, increasing to between 1
      and 3%. 12 In other words, 97 to 99% will not develop MS. I hope that answers your question!

  3. Avatar
    Eric Cabre

    I support the #TakeActionForMS campaign!

  4. Avatar
    Toàn Lien

    What a nice story

  5. Avatar
    Christopher McGee

    My mom had MS. She was diagnosed in 1962 and lived with it for 50 years. She had it from the waist down.

  6. Avatar
    Mary Martin

    Very informative. Will start reading my on this topic.

  7. Avatar
    Mike dotto

    I definitely believe the medical right show be at least 30 weeks as it may take longer to recover

  8. Avatar
    Mike Dotto

    Please extend the medical ei to 30 weeks asap

  9. Avatar
    David Bobier

    Hope everyone stays safe so that 2021 will be better

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