Not Fitting in Because of Your Illness
There are a lot of ways a chronic illness, like multiple sclerosis, can impact someone’s life. You’ve, no doubt, read about the many symptoms and how those impact our bodies. You’ve likely seen many missives on how the illness affects our friendships. You probably also know that in some cases, it can snatch your ability to make a living. Sometimes MS affects you in more indirect ways, like how you feel around others. Living with MS can sometimes put you in the position of feeling like you don’t fit in anywhere...like you don’t belong.
Can’t always play: Feeling excluded and alone with MS
For some people with MS, myself included, there are some scenarios where my illness gets in the way and prevents me from being like everyone else. I know that’s not a popular sentiment, but it’s a reality for a lot of people. If I’ve been active, my body is going to demand I pay that “MS Tax” and get rest at some point. That can make traveling and weekend trips a bit difficult.
Like many, I’m also super susceptible to temperature changes, which means the warmer months can be extremely isolating. Everyone is going to the beach? Eh, have fun. Sometimes there are some activities that may not seem too strenuous but that my body simply can’t handle anymore. Lots of walking? I’m out. Many stairs or hills? Nope. I have friends who like to go to a raceway every now and then. If the weather is nice, I often think, this is great, I can join in! Until I realize that the stands where everyone sits are super high up and require walking up stairs or bleachers which is super difficult for me. So sometimes my body just can’t do what I want and I end up missing out.
If you can’t play, you miss out twice
When you miss out on certain activities because of your illness, you aren’t only missing out on the actual activity, but also later when people reminisce about it. Sometimes it’s not even the same activity you’d be doing, but rather something common that most people do.
For example, being disabled, I no longer go to a 9-5 job, but most of my friends and family do. That inevitably makes me feel like I can no longer relate to some things they like to talk about. It makes me realize they can’t quite relate to me either. When you can not join in what others share together and no longer even live the same way as they do, it’s easy to begin to feel like you don’t fit in anywhere.
You don’t get it, until you get it
There are a lot of things about living with MS that you really can’t understand unless they’ve happened to you. The terrible confusion of brain fog. Having your mind and body absolutely swallowed up and held by fatigue. The sudden shocks of nerve pain. The spasms, tingling, and numbness. The worry of waking up and not knowing if you’ll be able to walk, talk, or even see correctly. People mean well, but unless they’ve gone through it, they can sometimes come off as like they have no idea what they’re talking about. How many of you have mentioned you were tired or fatigued only to have someone say “me too”? That kind of thing can really alienate you and make you feel like no one understands.
I was fairly young when I was diagnosed, so I’ve dealt with feeling like I didn’t fit in because of my illness a lot over the years. In a lot of ways, it’s why MultipleSclerosis.net is so important to me. When I felt alone and like I didn’t fit in anywhere, I found this site. Suddenly I could read about others like me. Folks that were going through the same things I was. Years later and I still rely on this site and community for those reasons. So whenever you feel like you don't fit in because of your illness, remember to come here. Read what folks have to say, interact with them, upload your own story. Realize that you do belong and that while MS isn’t your entire life, the part of that is, has people who understand it here.
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