How I Learned to Be Open About My RRMS
- by Andrea L.
- August 27, 2018
Andrea L. is a paid Advocate for Teva Neuroscience, Inc.
Some people with relapsing-remitting multiple sclerosis (RRMS) are comfortable talking openly about the disease, while others prefer to keep their personal health matters private. For me, having lived with RRMS for 24 years now, I’m very comfortable talking to just about anyone about my journey, but it wasn’t always this way.
Following my diagnosis, I remember trying to hide my RRMS because I was embarrassed and uncomfortable admitting I had a disease. However, that started to change when I began getting more involved at MS events in my hometown and after attending my first MS Walk. My family and friends came to support me, and that alone opened up conversations that allowed me to feel more comfortable talking about my RRMS. At the event, I realized I was now a part of the larger MS community. I embraced connecting with others with the disease and listened to their stories, which empowered me to share my own.
Now, if I ever feel uncomfortable telling someone I have RRMS, I try to start the conversation by talking about the MS community events I support. Sometimes I’ll even ask the person to join me in supporting the community by volunteering, which usually leads to some really meaningful conversations.
Sometimes I also talk about my RRMS at work. I’ve found that what has worked for me is to predetermine exactly what I want to disclose, if and when someone asks. I personally find the National Multiple Sclerosis Society’s Workplace Disclosure Decisions online resource to be helpful. I know that talking about my RRMS at work can be challenging, so practicing what I want to say aloud puts me at ease and helps me feel prepared to answer questions about the disease.
For me, being open about my RRMS and sharing my story with others who support me helps me feel confident. I enjoy talking about the disease with others because they are on my team and, in one way or another, they will be part of the next chapter of my story.
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