Why Speak Out?
When I was first diagnosed with a relapsing form of multiple sclerosis (RMS), I was faced with a dilemma that a lot of people living with MS have — do I tell people or do I keep it a secret? I made the choice to tell those close to me after quickly realizing there seemed to be a large amount of misinformation about MS out there in the world, especially pertaining to how the general population thinks MS does or does not affect people living with it. I began to realize this even more when I was dismissed from a job after they learned of my RMS diagnosis. The “supposed” reason for me losing the job was based on old, outdated opinions of what MS really is. I was told by my employer I would be a liability to my coworkers and probably couldn’t perform the tasks being assigned to me. When they told me that, I was so angry. I mean, who are they to tell me what I can or cannot do? I, and only I, should be the one to determine that. It was this incident that made me want to speak out.
I think that’s something all people living with the various stages of this disease can relate to at some point. MS is unique to the individual, just as much as a fingerprint, and I was not going to be put in a box and kept there because of people being misinformed. However, if I was to say that was the only reason why I decided to become an advocate for raising awareness of this disease, I’d be lying. While I was going down the black hole of the Internet trying to learn about MS, I found myself getting frustrated. I couldn’t really understand what I was reading, and the stuff I did understand scared me. Having experienced what I had post diagnosis, with being let go from a job and reading confusing and scary information on the Internet, I did not feel like I could relate to anyone out there speaking out about the disease. Based on that, I felt it was only right for me to try to speak about MS as positively and vocally as I could.
When we started the You Don’t Know Jack About MS campaign, I didn’t know exactly what would happen, but I knew I would be able to have a platform to speak from. I figured, “First things first, let’s talk about this and however this pans out, I’ll just roll with it.” One thing led to the next and now, five years later, and with the help of some really amazing people, I have been a part of something I never thought would have happened. For me, this campaign has been about educating as many people as possible in a way I could have really utilized when I was first diagnosed with RMS.
That’s not to say there wasn’t a learning curve, and at times I’ve often wondered if I have made the right choice when it came to speaking out, but now I have people reaching out via social media to share their personal stories with me. That alone has made going public about having RMS all worthwhile.