Finding Your Multiple Sclerosis Community By Rachel, Wife, Mother, Domestic Engineer • September 20, 2018
Why should you participate in the MS community? Well, finding a connection with people who are similar to you can be so helpful. While everyone’s journey is unique, one thing that we can all relate to is feelings of frustration, uncertainty, and even loneliness. Maybe you are a person living with MS or a person caring for someone with MS and that’s what brought you to this very blog. You’ve come to the right place—at least one of the right places. You are not alone!
When I was newly diagnosed I didn’t know a single person who had MS. Literally, not even one person. There I was, a young wife and mother with my entire life turned upside down. It was hard. Really hard. It left me feeling like I was torpedoed into a whole new world—one that I wasn’t too fond of. While I was so thankful for my excellent team of healthcare providers and their support, I yearned for the comradery of others who understood what I was going through.
One of the first things I did after my diagnosis was contact the National MS Society to see what information they had to offer. That was a great place to start because they put me in contact with a lady who was active in the local community. We quickly became friends and have remained close. As I made my way into the various support groups in our area, I learned that each one was different. They would have varying topics of discussion and sometimes a speaker would come to share advice and stories. But just being able to talk to others who could understand me helped me not feel isolated.
If you’ve tried visiting a support group and found that it wasn’t the right fit for you, I’d recommend seeking another one. I’ve had people tell me that they went to a group and left feeling depressed, so they never went back. I get that—every group has a different vibe. And some people prefer that cathartic experience. Just don’t give up if you haven’t found the right one. Keep looking. Or maybe you’d be interested in starting up and leading a support group yourself!
You can also connect and gather information via the internet and social media. Who doesn’t love having access to a whole community at their fingertips? I’ve even signed up to receive emails and articles from several places that keep me up to date on what’s happening in the world of MS. My one precaution with the online community is that it absolutely cannot replace a visit to your healthcare provider. I thoroughly enjoy hearing about other people’s experiences and advice, but I also do my due diligence to make sure that I am leaving the medical advice to the actual professionals. That being said, it’s good to make sure that whatever you are reading online is coming from a sound resource.
Being active in the MS community allows me to meet and relate to many people living with MS—more people than I ever could’ve imagined. I love being able to connect with all of you in person and here online. The MS community as a whole is made up of some real heroes; care partners and people living with MS alike. We are a dedicated and passionate group of fighters who aren’t willing to give up! Not that any of us would’ve ever asked for this disease … but it sure does give me a sense of pride to be a part of such an amazing community.
Looking for a way to connect with the community? Check out LEMTRADA events in your area!
- LIVING WITH RELAPSING MS
- relapsing ms
My Fellow Superheroes: My Care Team
By Rachel, Wife, Mother, Domestic Engineer, May 17, 2017
Hello, my name is Rachel and I am superhuman (I’ll title myself as Super Rachel) and I am indestructible, right?! NOPE—wrong answer
By Chad, Husband, Father, Software Engineer, April 14, 2017
If you’re anything like me, one of the initial thoughts crossing your mind after hearing, “you have relapsing MS” is “why me?
Attend a live event or watch one online to learn more about LEMTRADA.
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