On June 17, I had the pleasure of joining the Canadian Cancer Society and the National Caregiver Coalition in Ottawa at a roundtable facilitated by the Institute for Research on Public Policy and co-sponsored by the MS Society. We gathered together to discuss the income and employment needs of people dealing with illness, with the end goal to create a report for our government that will recommend ways to better support Canadians who live with illness and struggle to work. Collaborations like these, between organizations that have similar goals, are one of the best ways to move our advocacy efforts forward, and I’m proud to have been a part of the discussion.
People living with MS who continue to work report being healthier, more financially secure and more socially active than people living with MS who are unemployed. Yet Canadians with MS struggle to continue working in their prime career-building years, despite their education and experience. Moreover, many Canadians with MS cannot qualify for disability-related public or private insurance programs because eligibility is obtained through employment. Even if they do qualify, the income is often not enough to maintain a decent quality of life.
Last week’s roundtable brought together senior federal decision and policy makers, top Canadian policy economists and researchers, and social policy think tanks (i.e. Vanier Institute of the Family, Caledon Institute of Social Policy and the Conference Board of Canada). We discussed the current state of knowledge on employment and income supports, in addition to the challenges that still exist in the system and what can be done to address them. The report from the roundtable discussion will guide our advocacy efforts moving forward, to ensure we improve supports for all Canadians dealing with illness, including people living with MS.
Multiple sclerosis, like many chronic and episodic illnesses, creates a life of uncertainty and unpredictability. What we can do at the MS Society is advocate for supports that create as much stability as possible by eliminating barriers to income, employment, and disability support systems that include both private and public plans.
I look forward to sharing the report in an upcoming blog, and I welcome your comments here as we work together to improve quality of life for people affected by MS.
Being diagnosed at the beginning of my prime career years has proven to have many challenges. I’m young, I have years of education, I’m ambitious and I’m not going to let MS hold me back. Within a year of diagnosis I had a significant carer opportunity that would mean changing jobs and at this point I was faced with a huge hurdle; do I leave my job with it’s “safe haven” of guaranteed long term disability insurance should I need it? Or should I take this huge opportunity and risk the potential to not be covered for my “pre-existing condition” because I’m under the care of a neurologist. I was miserable in my “safe” job. I have a young family and I earn significantly more than my husband.
This was a big risk given the circumstances but I took it. I made it through the “pre existing condition” period. My career took a major step forward, I’m learning and I have no intention of stopping here. But what I think my situation highlights, and I’d really like to advocate for change on this, is that this disease puts barriers to advancing careers and continuing to work that aren’t even physical in the way of continuing to work. 3 months into my new employment I woke up with almost no vision. I pushed through and luckily my optic nerve healed and I was able to continue through but at that moment I wondered what I had done; to myself and my family. And what can be done about this? It’s a self-fulfilling prophecy is people with unpredictable chronic illness are forced to stay in jobs that they don’t like because they “might” need their long term disability benefits despite never having needed them in their entire careers to date. If I hadn’t taken that leap I would likely be on LTD now; I push every day because I love what I do and I am passionate about it but if I wasn’t? I doubt I would continue to push. I don’t want to stop being ambitious. I don’t want to stop pushing or reaching for the next level but can I take that risk again as my disease becomes more pervasive? I’m currently in a senior leadership position but I aspire to the C-suite. I’m very good at what I do. What happens when that opportunity knocks? And I know that it will. Do I risk income security and take on the next adventure? Or do I stay in my safe little nest of guaranteed long term disability insurance and eventually just end up on it because I’m depressed from being stuck and don’t have the motivation to continue to push?
Help me change this. For all young, ambitious people with MS and for me.
Thank you for blogging about partnerships to explore income and employment supports for those with chronic conditions such as MS. I’m faced with a similar predicament to Angela (thank you for sharing your story), and it comforts me to hear that I’m not alone in my challenge regarding career choices by virtue of my condition (MS).
I’ve spent many years developing my professional credentials, and someone in my position would ordinarily have many career options available to them. Like Angela, I worry that the career choices I will make (and thereby earnings to support my life as an individual, but also as one managing a chronic condition) may be heavily limited by the benefits and disability support offered to me. Furthermore, there is the worry that the stigma associated with the disease may reflect unfairly on job opportunities and progression if I were to divulge my health status (whether by volition, or as a result of a visible relapse).
For those of us with MS who haven’t yet had a chance to even begin our careers, we are paralyzed by these considerations. I hope there will be consideration for these worries so that we can continue to be ambitious and keep positivity and hope in our lives!