A single butterfly trapped under a glass being held down by stones while more butterflies fly freely around it.

MS in My 20s Part 2: How MS Impacted My Social Life

A quick note about this post; I really don’t mean to sound depressing here. I don’t want to bum anyone out, and I’m not looking for any kind of pity. I’m just trying to give an honest depiction of what I believe was one of the most difficult parts of my life with MS in my 20s. Unfortunately, I imagine that most people reading this will be able to relate in some way, shape, or form.

We are all social creatures

When I think back on my life with MS in my 20s, one of the greatest sources of hardships I struggled with was the social impact MS had on me. When people are diagnosed with a chronic illness like MS, it’s very common for them to experience all sorts of social difficulties. This is, without a doubt, a painful part of MS for everyone who experiences it, regardless of age. We are all social creatures. BUT, It’s hard to argue that a healthy social life isn’t an especially important part of life at that age.

Diagnosed with MS in my 20s and the following isolation

Receiving an MS diagnosis at the age of 20 was many things. It was terrifying, confusing, intimidating, and overwhelming on so many different levels. But worst of all, it was isolating. There was a new color in my life that seemed to be everywhere I looked, but no one else could see or even imagine it regardless of how vividly I tried to describe it. I felt so alone.

Don’t get me wrong, I had plenty of support. I was lucky to have family and friends by my side, but no one actually knew what I was feeling. No one could vindicate what I was going through. So sure, I had support, but sometimes it felt like I was an astronaut in outer space all by myself. I had continuous radio contact with people who were doing everything they could to try to help me, but I still felt alone...alone in space.

Social loss: Was it my fault?

Growing up, I always had a rich social life. I had lots of friends, I dated regularly, and I was always going out. After MS had come around, that all slowly changed. For one reason or another, people gradually started to disappear. As I’m sure you can guess, this only reinforced the feelings of social isolation I was already feeling. This was not what I imagined my 20s to be, I mean...what happened?

Maybe some people just didn’t want to be around a situation as “heavy” as MS? Or maybe they didn’t know how to? Or perhaps they considered me and my MS a buzzkill? I never actually knew why my social life seemed to be falling apart, which only added to the hurt. Was it me? Was it my fault?

Cutting people out of my life

One thing that seems to be an almost universal truth about chronic illness is that it can show you the true colors of the people around you. Turns out, some of the people in my life, people who were my friends, were a bit unhealthy to be around now that I was stuck with MS. Unfortunately, this meant that I sometimes had to cut people out of my life.

Without going into any detail, it was surprising, and painful, that anyone who I had considered a friend couldn’t accept that something had changed. That I couldn’t do or handle, some of the things I used to be able to do. Instead of supporting me, or at least remaining neutral, they started treating me horribly. The stress of constant guilt trips or even arguments (for example) was greatly affecting my MS. Cutting people out of my life wasn’t ever easy, especially because I usually didn’t want to lose someone that had been part of my life, but I knew I had to.

I made lots of friends thanks to MS

Of course, it wasn’t all bad. Thanks to MS and the internet, I met lots of people from all over who also had MS. People from many different walks of life who knew just what I was going through because they had gone through it too. Or, they might have been currently experiencing these things. I finally felt heard. Vindicated. Many of these people became some of my closest friends. We could talk for hours and never even mention MS! I even got to visit and hang out with some of them! They got me through some really tough times, and for all of that, I am grateful. I don’t know how I would have made it this far if not for them.

Feeling left behind

Now, having said all of that, one image comes to mind so much more vividly than anything else when it comes to my social life in my 20s. Growing up with all my friends as kids, I developed an idea of what my future would be like. We all had, and we were all on our way. We were all on the same path forward. Until we weren’t.

It felt like I had been on a cross-country train trip with everyone I grew up with. We were all traveling in the same direction and at the same speed until I got off at a stop to stretch my legs and didn’t get back on in time. The train, and everyone I was traveling with, left me behind at some sketchy train stop in the middle of nowhere, in the dark, and without a map. I was now alone with absolutely no idea where to go or what to do. Maybe if I start walking along the tracks, I’ll somehow catch up with everyone?

Coming up

In part 3 of this collection of posts, I’ll talk about how MS shaped the way I saw and thought about my body throughout my 20s. Throughout this series about life with MS in your 20s, if there is ever anything you would like me to talk about, just let me know in the comments below! Thanks for reading!

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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