Julia: Making MS matter all year round

Guest post by Julia Stewart

I’m a successful librarian in Fredericton, NB, managing a very busy public library, and I wouldn’t trade it for the world. I’ve been able to achieve this goal through hard work, determination and a little bit of stubbornness. I’m proud of how I’ve been able to balance my personal life and my career with the love and support of my family, friends, and partner.

My mother was with me when I was diagnosed with multiple sclerosis in 2004, and we were both in shock. Telling my employer I had multiple sclerosis at the time of my diagnosis didn’t go over well. The diagnosis was a struggle – not only did I have instability in my employment, I had uncertainty in my future. Luckily, my family has been incredibly supportive of me whether I’m participating in research studies, walking in MS Walk all over the country, or assisting with MS government relations advocacy work.

Being newly diagnosed, I didn’t know what my life was going to be like, I didn’t get the support I needed from my employer and I think that was due to a number of reasons. People are afraid of the unknown, and I think my past employer was unsupportive because I was diagnosed when I was working there and hadn’t lived with the disease for very long. They just couldn’t accommodate me – I was a tour director for a large organization and was on the road all the time, and this is when I noticed my symptoms flare up. As a result, they changed my position so I was working from home full-time, but the isolation didn’t work for me because I need to be around people – I’m very social. My family jokes about this as I’m now a librarian, but trust me, libraries have evolved and are not like they used to be! I think my employer could have done more to accommodate me. I’d put in so much time and contributed so much to the company and felt I was put out to pasture.

They didn’t understand the episodic nature of MS and I was forced to leave the organization. I felt disenchanted and struggled with making ends meet while I was unemployed. Some of the greatest obstacles, when dealing with MS, have to do with the invisibility of the disease. It’s often hard for folks to believe I live with MS as I don’t fit the classic idea of the disease. Not being able to explain my invisible symptoms has been extremely difficult. Managing the stereotypes around the disease has also been challenging.

When it comes to living with MS, my future financial stability worries me most. Even though I currently have a wonderful employer and position, MS is unpredictable. I worry that I will not be able to support myself as I age with this disease. Government programs help but are certainly not the complete answer. I think the most important thing our federal government can do is to make Work-Work. Since MS hits folks in their prime, many want to work as long as they can. They’ve invested in their careers, and studies show that being a contributing member of society is empowering and healthy. Our government could help by providing incentives for employers to support flexible work hours, supporting funding for episodic illness, and providing income supports for those who need to take time away from work.

Working as a volunteer with the MS government relations team has opened my eyes to how policy is made and how the wheels of government do turn, but just at a much slower pace. Each time we speak with an elected official, we have an opportunity to tell stories and make an impression that could help influence change. This is hopeful and very positive work. I make connections with provincial and municipal governments in New Brunswick and it’s awesome, I love it. My brother was an MP for a long time and he would advocate for MS in the house of commons, which led me to get more involved with the MS Society as time went on.

During my time advocating for MS, I’ve seen changes in accessing the disability tax credit which is amazing – the process is now more fluid then it used to be. I’ve also seen the inclusion of episodic illness in the definition of disability which is so important to people living with MS – it’s also an important mind shift for all Canadians and employers. It’s usually a long process, but sometimes we do want the government to think long and hard about decisions that are going to impact future voters, because if they have a knee jerk reaction to issues, things aren’t going to be done well. Having things you’ve worked on, and advocated for, come full circle is a great feeling.

This federal election, I encourage you to send a message to your candidates to help #MakeMSMatter. Your message is an act of greatness because it truly will have an impact on them. I can almost guarantee from my time talking to politicians – they know someone living with MS, or they’ve opened their door to a constituent who’s affected by MS and have been educated on the disease. Your message is an act of greatness because it’s bound to trigger a conversation or a memory of something within your candidate, and they’ll remember why advocating for MS is so important in Canada.

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