Guest post by Juan Garrido
Growing up, I probably had heard of multiple sclerosis (MS) at some point through school, the news, or the internet, but I never really understood it. And I definitely wasn’t expecting to be diagnosed with it at 19. I had just finished my first year of university and was excited for what my studies, career, and future would hold. But after waking up one day without feeling in my legs, going to a walk-in clinic, spending many hours in the ER, and having an MRI, I was diagnosed with MS. Out of nowhere, it felt like my life went completely off the rails.
I was scared, and I didn’t really know what MS meant or what it would look like for me. On the advice of my neurologist, I didn’t tell many people. He said there would be stigma. So, I stayed silent. I didn’t talk about my MS and quietly took my needle injections every day. I thought that’s what was best for me.
The first December I was diagnosed, I experienced the worst flare-up I’ve had. I noticed I couldn’t focus my eyes, I was losing my balance, and I was nauseated. It felt like I had no control of my body. My mom rushed to Toronto to pick me up from my dorm and took me to the hospital. They started me on steroids and told me that I’d have to have two hour-long infusions every day in the ER for a week, including Christmas Eve and Christmas Day. I woke up every day that week with extreme pain on the side of my face and had no energy or appetite. It was the worst experience of my life.
The steroids ended up kicking in, and I recovered – mostly. As people asked how my holidays were, I realized that not only did I not want to stay silent anymore, it also wasn’t good for me to do so. I’ve always been very extroverted, wearing my emotions on my sleeve, telling my story, and listening to others’ stories. When I kept quiet, I felt dishonest to other people, but more pressing, dishonest to myself. I needed and wanted the support and love of my friends. I wanted to be part of a community actively trying to improve the lives of everyone else affected by MS, so that no one would have to go through what I went through – or worse.
I reached out to the MS Society and got involved by telling my story through writing, video, and in person. Any chance I got, I would tell my story. I gave a TEDx Talk at York University about learning how to grow from my vulnerability of living with MS.. I’ve had the opportunity to travel across the country, witnessing the passion and heart that lies within the MS community. As a staff member at the MS Society, I work with the community everyday to provide support, advocate for research, and build capacity for action.
This year, I want to Kiss Goodbye to MS. The confidence and hope that I’ve gained from this community is what drives me everyday. The global MS community is committed to supporting each other and raising funds for valuable research, programs, advocacy, and education that improve the quality of life for people affected by MS. Through sharing my story, I can connect with others and together we can advocate for ourselves, fundraise to advance research and discover new treatment options, and build community.
No one needs to fight MS by themselves, and thankfully, now we don’t have to. Together, we can support one another, fundraise, and as a collective, we can kiss goodbye to MS once and for all. Join our #MSSquad and take part in Kiss Goodbye to MS this month.
Juan Garrido is an MS ambassador and staff member at the MS Society of Canada