Longing For Belonging
The other day, I was fortunate enough to hang out with some friends of mine (socially distanced and in an open air environment, of course). As we made conversation and caught up on each other's lives, I had this nagging thought in the back of my mind. As I listened to everyone go on out about what they’ve been up to lately, I couldn’t help but think, “I don’t belong.” Not that I shouldn’t be there, not that I didn’t care about them, but that my day-to-day life seems so outstandingly different than everyone else around me.
Chronic illness and loneliness
I’ve discussed the topic of loneliness and MS often over the years, typically expounding on how our disease can keep us from seeing other people. That’s most certainly an issue, however, one aspect of chronic illness and loneliness, is that you don’t have to be absent from other people to feel lonely. With MS, you can be surrounded by others but still feel like you don’t belong.
As I’ve said, a chronic illness like MS can be extremely alienating. For many people, it keeps them from physically seeing other people. Some people, myself included, end up on disability and rarely get to see other people face to face during the day. We don’t even get to see others for work. Some with MS can still work, but that’s about all they can do. Fatigue and other symptoms make trying to have a life outside of work a near-impossible task. When they’re struggling with their disease, even being social in the workplace can be difficult and lead to them appearing rude or disinterested. Disabled or not, many people with MS end up losing friendships because they can no longer physically keep up. This can make life with MS feel like being in a prison for many people.
The disadvtange of not working
Being physically separated from others is an emotional challenge, but our disease can isolate us in non-physical ways as well. For someone like me, not being able to work puts me at a huge disadvantage with others (and not only financially). Discussing one’s work is an extremely common social habit. When you don’t work, you’re at a bit of a disadvantage when it comes to the conversation around others that do. You honestly don’t realize how big of a part talking about our work is in everyday small talk, until you are no longer able to do it. Not only does not working give you less to talk about and relate to, it can feel like your illness gets highlighted when the topic comes up. Honestly, it can feel like you are being reduced to being the “person with MS” and that you don’t belong in the conversation.
I can't relate to people like I used to
Not working is one area that can make us feel like we don’t belong, but there’s much more than that. The same issues that cause someone like me to not be able to work or to be able to work and not do much else, affect everything in our lives. I don’t have the same interests that I once did. Over the years, I’ve adapted to what my body and mind can handle and it’s not the same as most people around me. I’ve even stopped talking to long time friends because I couldn’t relate to them anymore.
That’s the biggest reason why I end up feeling like I don’t belong, I can’t relate to people the same ways I once did. Not only can I not relate, I find myself longing for the days when I could. I miss my old activities and the friends that came with them: hockey, running, kickball, softball, homebrewing, and after-work happy hours. These days, it feels like I have so much less in common with most people. I make it work, most of the time, because I’m an outgoing person. Deep down though, I still feel like I don’t belong anywhere.
Now I don’t always feel like I don’t belong, but it certainly happens frequently. As I’ve mentioned, I’ve adapted and found new interests over the years. I have a lot that I’m passionate about and I’ve met folks (virtually) all over the world that share them. Over the years, MS has dramatically changed the types of things I’m into. By keeping an open mind though and exploring new things, I’ve still found people that I can relate to, even if they aren’t close to me (some are even others with MS).
There's a place for you out there
It’s important to remember that the world is a big place and because you may not feel like you belong or have anyone to talk to, doesn’t mean there aren’t similar people like you out there. You have to find them. As harmful as social media can seem at times, it’s great for finding others with similar interests (particularly the “Groups” feature of Facebook). I still make it a point to socialize with people around me, even if I don’t always feel like I fit in anymore. When I do want to connect with someone who maybe “gets” me a bit more, I hop online and talk to someone else with MS or I pop into one of my groups that focuses on my interests (had you told me years ago that there were so many adults across the world that are into LEGO, I don’t think I’d have believed you, but there are). There’s a place for you out there, but you need to look for it.
How many specialists did you see before finding "The One"?