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Why I blog about my MS experience

By Matt Cavallo

One of the greatest things about the internet is that you can share experiences with others no matter where they are. If you put it out there, someone can find it. This was so important when I was first diagnosed because I needed to know I wasn’t the only person out there feeling the way I did. I was looking for the sense of community so I started blogging and sharing my blog on social media a long, long time ago. I think the first one I published was in 2008. 

When I started blogging about multiple sclerosis more than 15 years ago, I was solely focused on MS as my only health problem. MS was new to me. I had never been sick before. I had never even broken a bone. So when I lost my ability to walk in 2005 because of transverse myelitis, my life and my writing took on a whole new meaning. I wanted to learn and write about the MS patient experience. I also wanted to share my writing so that others who were going through similar experiences knew they weren’t alone.

I was also only 28 years old back then. I wasn’t sure where the MS journey would take me, but I was consumed with doing my best to stop my MS from progressing. I have a family history of MS. My Aunt Loretta had it and she died when I was four. My only living memories of her was that she was in a wheelchair. She could walk. She also couldn’t talk, she could only mumble and moan. She died in 1981 when I was only four years old. 

I was the next to be diagnosed in my family, which was 25 years after Loretta had passed. While there were new advancements in MS, Loretta’s history is the only MS experience my family had, so from the moment of my diagnosis, everyone in my family was convinced that what happened to Aunt Loretta was going to happen to me. It doesn’t take much before you start to hear the whispers and you believe the talk. I think that is why I turned to research.

When I was diagnosed with MS, I was working as a real estate developer in Boston. Once I was diagnosed, I felt compelled to learn more about the healthcare system. I no longer wanted to be a developer. Rather, I wanted to immerse myself in healthcare and learn as much as I could about the healthcare system because access to healthcare services became extremely important to me once I was diagnosed. 

I left real estate and went to work in administration for a neuroscience clinic. It was the same one where I received my infusions at the time. I then went back and got my masters of public health administration. 

During this time, I would document my patient experience. At first, I was doing it as a way for me to remember what I had gone through. Then, I shared my writing with a friend who thought others would benefit from it. So, I started to write about my MS experience and post it on my personal blog. Now this was in the late 2000’s. Blogs have come a long way since then.

Today, there are many mediums to express yourself. There are traditional written blogs. There are video blogs, and there are audio blogs in the form of podcasts. My advice to you is to share your story. Share your experiences. Share what works for you and share what doesn’t. It is through sharing our experiences that we learn and grow as a community. A community I found when I decided to start blogging about life with MS.