What Living With MS Has Taught Me About Advocating For Myself

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When Jessica received her multiple sclerosis (MS) diagnosis, she gave herself a weekend to wallow. “I went dark and binged Downton Abbey for a few days. But then I said to myself, ‘ok, now what? I’ve got to take action.’ Because I knew nobody else was going to push for me except me,” she says.

Her MS journey started in the fall of 2014. The on-the-go mother of two and marketing executive at her husband’s technology company says that she experienced odd sensations of hot and cold that did not make sense. She also went to a Pilates reformer class and couldn’t feel the strap on the bottom of her foot. “I knew something was wrong but the doctor at urgent care thought it was a pinched nerve. I started intense physiotherapy and the sensation started to come back,” she says.

A few months later, Jessica had what she thought was a very intense migraine and the next day she developed a strange aura. Within a day or two, she realized she couldn’t see anything out of the bottom half of her left eye. Eventually, she couldn’t see anything at all. Her vision started to restore within a few days, but it prompted an MRI which led to her MS diagnosis.

MS is a chronic and progressive autoimmune disease that affects the central nervous system. The immune system attacks the protective sheath that surrounds the neurons in the brain and spinal cord. This can lead to physical symptoms such as fatigue, numbness and tingling, blurred vision, double vision, weakness, poor coordination, imbalance, pain, depression and problems with memory and concentration.

By the time Jessica got her official diagnosis, she already sensed it was MS and had started to reconcile it in her mind. “But I still needed that weekend to grieve,” she says. “I was 38 and had young kids, and I felt very ‘woe is me.’ Giving myself that time was the best decision I could have made. Because I decided I couldn’t just sit here and let MS happen to me. I decided that I was going to decide what was going to happen. And that was just the mindset I needed.”

Taking control of her health

“My husband, Brendan, likes to say ‘we work the problem.’ So, at that point, I shifted my thinking: What do I need to do? How do I take action? How do I make the right treatment and care decisions for me?”

Jessica says that one of the most important things she's learned is that everybody's journey with MS is different. Because there are so many different factors, she says that self-advocating and being able to make decisions about treatments starts with the person living with MS, and how the disease presents itself.

With MS, time matters

Experts advise people diagnosed with MS to get started on treatment as soon as possible, as some treatments may help slow down the progression of physical disability, and to regularly evaluate their care plan and their goals with their neurologist and team.

Resources like the MS Treatment Discussion Guide were developed to help people living with MS align their needs, wishes and priorities with their treatment options at different points throughout their journey with MS. 

And those decisions aren’t set in stone. People living with MS have permission to change their treatment as symptoms, lifestyle and priorities evolve. “It’s just a matter of open communication with your care team,” says Jessica.

Becoming a self-advocate

Having MS means collaborating with a team of people including neurologists, primary care physicians, MS nurses, psychologists and physical therapists. It also includes multiple clinics, MRIs and other tests. So, Jessica says that it can be hard to understand how to navigate the system and to self-advocate. “But when you look at the kind of resources that are now being created for people with MS, it’s become very focused on how a person advocates for themselves and what questions they need to ask.”

When Jessica was first diagnosed, her primary care physician told her to take her husband and a notebook to her first appointment. “You feel overwhelmed because you have all these questions, and whether it’s your spouse, your best friend, or a relative—they’re going to hear different things and ask different questions, too. That was really helpful to me,” she says.

Jessica is buoyed by the MS research being done and the number of treatment options available. “You really can get an individualized treatment plan, but you need to be able to paint a picture of the life you want so you can inform that discussion with your team—and that’s an ongoing conversation throughout your life.”

Jessica is grateful for the skills she has developed in her journey with MS so far, saying that she feels hopeful. “Every time there’s a new MS breakthrough or treatment, people email it to me. Right now, my treatment is working for me, but I know that if at some point things change, there are a multitude of avenues I can explore and I have the tools to successfully collaborate with my team.”

Visit MyRules.ca for more helpful resources for navigating life with MS.

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