Building Your Support Network
I was trying to think of more blog topics and I started reaching out to some of my friends with MS to see if they had any great ideas, and that’s when it hit me. Duh. Having friends with MS and what a game changer that can be. When I was first diagnosed I didn’t know a single soul who had MS so I took to the internet to find some other people, specifically people in their young twenties. The people I found, and the friendships I created were crucial to my acceptance and understanding of living with MS. If you’re newly diagnosed, I’d ask you to consider who is in your support network? Do you have friends and family who will support you? Do you know other people living with MS? Do you know anyone who you can meet with in person who has MS?
I have a core group of about 4 people I know who live with MS who I can call up, text, email, FB message with any and all of my MS related problems. In the beginning, we often contacted each other to talk about MS related things and our lives in regards to MS. But as time has passed we’ve created friendships based on more than just MS. These are people who I don’t talk to everyday but I know will drop anything to talk with me if I needed it. Having a supportive family and friends is really important, however when you find people who “get it” it really can change everything.
If you’re one of those people out there who doesn’t know anyone else, who just reads blogs, and who just looks at forums, I would urge you to get more involved and find some MS friends. Its incredibly satisfying to have people who understand you and even more so validating for your symptoms. It can be helpful to have people to bounce ideas, or treatments off of who are knowledgeable on the topic. If there is a blog you really like, email the writer and create a friendship with them. This road is a lot easier to travel when you have travel buddies! For me some of my MS friends are people that I talk to frequently, or hop on a plane to go visit. They are people who will take a train to see me, or will check up on me after starting a new medication. They are people who genuinely care about my well being overall not just about my MS.
As someone who is a member of multiple chronic illness communities, I can honestly say that the friendships I’ve built with other patients are unlike any other friendships I have. They are stronger. More valuable. More like family. Because so much of my life is focused on advocacy and awareness of my conditions, most of my friends have some kind of illness and my life is so much easier because of it. If I’m too tired to go out to the bar, or I need a nap mid day, my friends all understand and might just take a nap too! I truly value these people. Looking back on my MS journey, and not found the blogs and communities I did at the time, I don’t know where I would be right now in terms of acceptance and understanding. If I had tried to go at this alone, I would have had a very different experience. I have met a few people on forums, and those can be a great place to find a lot of people, and if you’re lucky even someone who lives close to you, however a bit of a warning about forums. Many forums are a place where people go when they have questions or problems. Most people don’t go to forums to post about the great day that they are having, and in the beginning I found forums very depressing and made me question my future often. I think forums are a great resource but if you don’t have a question or an experience to share, I would urge you to find companionship elsewhere. Nowadays, we’re lucky because so many people are out there telling their stories in blogs, so you get all sides of live with MS, and its a true and honest account. Those are the people you want to be friends with, as those people are obviously willing to share their own story and often are more willing to help others too.
Who is in your MS support network?