Feel Free to Speak

Living with a disease that most people do not know about can be tough on a mental and physical level. Since my diagnosis in 2013 and going through many important stages in life, I learned that you have to open up and talk about certain things with others. Living with multiple sclerosis (MS) is not the best thing ever, but it is not impossible either.

After my diagnosis, I decided to keep my MS a secret and not tell anyone. If I did not think about it or told anyone, it was not true… right? This mentality worked for the first two years. At year three with MS, my walking began to be impacted, which was harder to ignore. That is when I realized that I would need some help and that it was time to face reality. In opening up, I want to share some tips and encouragement that have helped me in talking about my diagnosis with others.

Start Small

Opening up to people is a scary idea for most people. As a 16-year-old, I was afraid to tell people what was going on with me. I tried to be an “average” high school student, but it was hard to be “average” with my difficulties walking. I was afraid to tell people about my problems for the fear of becoming “that friend.” With that in mind, I only told a few friends – the ones I felt comfortable talking about my issues with. Seeing how they reacted to the news and provided support made me feel accepted, which was a great relief.

Go at Your Own Pace

After telling the few people about what I was going through, I slowly began feeling comfortable telling more people. I began to get more motivated after seeing and following the many people on social media who have MS. Seeing how they are so free to speak about how they feel and let the whole world know was an eye opener for me. I was scared to be speaking out like that in the beginning, but after telling the people around me, I began to feel more confident in sharing my diagnosis to the world.

Advocate for Yourself

A major part of telling people about your diagnosis is that you provide people with information that could help them help you when you need the assistance. Each patient with a case of MS is different from the other. We share one thing in common, the disease, but we all have different symptoms. After learning my limits and sharing the information to others, I feel more comfortable and at peace knowing that I am in an environment where people can assist me when needed.

Great Conversation Starter

You never know what kinds of people you may meet along the journey. Before the pandemic began, I rode a mobility scooter to get around university campus. I would meet a lot of people while riding around who were curious to see how they could assist me. Seeing how interested people were to learn more about MS and lend me a hand made me feel welcomed into the environment. I lost the fear of feeling like I would not fit in after meeting more people than I imagined.

Living with MS may make you feel all alone and scared of others, but the reality is that there is no need to feel in such way. People are open to listen to how you are feeling and assisting you whenever the need comes. Feel free to speak because you deserve to be heard!