MS Awareness VS stigma: Vanquishing the taboo

Guest post by Chisani Doyle-Wood, MS Bike ambassador & MS awareness champion

On a summer day last year, I was sitting in my doctor’s office alone. I’d been in this chair a lot lately, and when my doctor came into the room, she announced that she had the results of the most recent MRI I’d undergone. “Have you ever heard of MS?” she asked, looking at me. Immediately my mind was whirling, and my thoughts jumped to one of the few times I had heard the word before – over 15 years ago, when a woman had visited my elementary school and shared her story of how MS had left her wheelchair-bound. I was stunned.

After the appointment was over, I sat alone outside for a while and just cried. After what seemed like a brief meltdown, I called my parents. I tried to stay as calm as possible and not cry, but as soon as my mom picked up the phone, out came the water works all over again. While I waited for her to come out to meet me, I reached out to a few of my friends – some of whom would leave work early to come with my mom and I to my next appointment. Later that day, those same friends came over to cook dinner and hangout with me.

My brother was not living at home at the time, and a few days later I sent him a message. The next day, he moved back home and never left. Sometimes I get the feeling that everyone around me is still coming to terms with it all. I mean, I’m even still working on coming to terms with it all. I was 26, active, and I rarely got sick. What was my future going to look like?

Sometimes it’s still strange for me to identify with the fact that I have MS. I’d been having a lot of problems with my health over the last couple of years – severe bouts of vertigo that left me in the back of an ambulance, dealing with overheating (something I learned to manage with pain relievers and ice packs), numbness in the right side of my body, and the ever-present floaters in my vision. Every year, I lay in the whirring MRI machine, but with inconclusive results, my symptoms were shrugged off by my doctor time after time. It was frightening not knowing what was causing my body to act like this. The diagnosis gave me some sort of closure, but I think I had always hoped that whatever I had would be fixable.

I began to tell people about my MS one at a time and in different stages. At the start of it all, I found reliving my diagnosis, and repeating the same story over and over to be tiring and overwhelming. I avoided everything MS related for a while, but eventually found myself looking for a way to feel connected to the community of people I knew was out there – all going through the same thing I was. This is where my interest in MS Bike first came from. I hadn’t ridden a bike in 15 years, but I thought, “why not!” I ended up borrowing a bike from a friend, and together a group of us signed up for MS Bike. At the time, this was my way of turning what I thought to be bad news into a positive journey.

One evening my dad and I went out to get some exercise, so I brought my bike. This first bike ride involved my dad pushing me from behind for a short while. I remember feeling a twinge of embarrassment – here’s me, this 26-year-old woman having her dad re-teach her how to ride a bike. Luckily, a lot of my friends hadn’t ridden a bike in a while either, so we made sure to get together during the weekends to train. Event day was warm and welcoming, I felt enveloped by the energy at the halfway point and by the huge group of people who were rallying together for the same cause. I remember finding the second leg of the event to be harder than I thought it would be, and it was emotional to see my family and friends cheering me on proudly at the end.

I often find it hard to come to terms with not having control over my body, and the unknown of my future living with MS. I was diagnosed in the summer of 2016, but I only started taking medication in March of this year, after I had a relapse in February.  For a while, I had built up this reality for myself – one wherein the doctors were wrong, one wherein I actually didn’t have MS. It wasn’t until I had to face deciding what treatment I wanted that my false reality shattered. It was real. This was happening.

With this medication, I’ve experienced quite a few side effects like chills and an achiness in my bones, but for now, I’m just trying to deal with it. Currently, I go in for blood tests every two weeks to monitor my liver, and my dosage was temporarily reduced after my liver enzymes skyrocketed. At times, when I think hard about my diagnosis, it makes me nervous, but I try to stay as positive and optimistic as possible. I have found that my friends and family sometimes worry about me, but it has brought us closer together, and together we do our best to manage and learn what we can about this whole MS thing.

Choice is a big thing for me. There are a lot of things that I haven’t chosen, that I didn’t ask for, that I don’t want to have to deal with forever, but I try to roll with it. Fortunately, writing has always been an outlet for me, and throughout this journey it’s become more like therapy for me, allowing me to put every emotion and feeling down on paper.

Whether I have numb arms one day, or can’t see clearly the next, I rock it anyways. You see, I find with a constant focus on a cure, everyday experience can become over shadowed and I don’t want that. I want my experience to be recognized – and all my fellow MS’ers experiences to be recognized. Otherwise, how are we supposed to advocate for one another? How are we supposed to develop support?

As of now, I continue to live the best life I can, even if some days my “positivity” is capsized by those emotional waves. Physically I may be a little weaker, more tired, even more forgetful at times, but I remain strong. Perhaps, maybe even a little stronger than before, and I believe I have many people to thank for that, including myself.

Our resilience, our bravery, as persons living with MS, is always something that truly amazes me and this is something that continues to keep me going.

I live with MS every day, but I’m not hiding from it.

Chisani is our fearless MS Bike ambassador living in Toronto, Ontario. We’ll be sharing more stories from other #MSBike ambassadors across Canada throughout the MS Bike season. Support cyclists like Chisani and donate today at msbike.ca!