Loneliness: The Worst Effect of MS and Disability
For a little more than three years now, I’ve been on disability. I’ve already talked at length about how I got here and what it’s meant to me, and some of the effects it’s had on me. One of the big consequences of me being pushed on to disability has been the loneliness I feel. For me, the loneliness is not just a feeling; it’s very real, I’m literally alone most of the time. The longer I’ve been in this situation, the more I have started to feel that being alone so much can change a person.
Now, I admit, I’m a bit of an extrovert. I like being around people, I like talking to people (even strangers), and I like being active in social situations. That said, I’m also someone who’s always enjoyed some alone time now and again. Disability has really forced that alone time: not going into work every day is tough (I should note, I’ve had stretches in my career where I worked mostly from home and didn’t always like that either). Aside from feeling like I don’t contribute to anything, I also have a hard time not being able to interact with actual people in person. So being on disability, plus the effects MS had on so many relationships, including my marriage, it’s easy to see that my interactions with real in-person human beings have plummeted dramatically over the years.
Now, I’m not completely alone all the time, I do have a roommate who stays here sometimes (maybe half the week, but at night), and I do try to get out. I try to get out at the very least every Thursday to go play trivia with some friends. So what am I complaining about? Well, depending on how I am feeling and especially the time of the year (warmer months mean more isolation for me), I may only get out that one Thursday night a week. That leaves some significant time to be home alone or at least home and occasionally seeing my roommate. I admit, my dog is 100% my best friend. He’s the Wilson to my Tom Hanks. At least he’s a living creature though, I’m thankful for that. If he wasn’t here and I instead had a volleyball lying around, I sort of worry that I’d be talking to that instead. So why not just get up and go somewhere? Well, I don’t drive because of my MS (with a few small exceptions here and there, Shhhhh). Living where I live, in an area that seems pretty rural to me, not driving can be extra isolating.
Activity on social media
Like many people in my situation, I do talk to others all the time through social media and various instant messengers. I’m probably more active than most on social media because I’m home alone so much (that’s also why I tend to post more pictures when I am actually out of the house. I think sometimes that makes people think I am out more than I actually am; that’s not the case at all, I’m just really, really happy to be out). It’s a wonderful thing to have and I’m so thankful for all of the other folks I’ve met there, but it’s still not a full substitution for meeting and talking with someone in person.
There have been countless studies about how being alone a lot can affect your body and your mental stability. I had intended to include some of that here, but frankly, there are so many it’d be hard to choose. Do a simple web search and you’ll see what I mean. Bottom line, studies have been conducted and have proven that being alone for significant periods of time is bad for us. There is good reason that solitary confinement is one of the ways prisoners are punished, there are also good reasons why some people feel that it’s cruel and unusual punishment.
Feeling awkward around others
I started all this talking about my concern for how being alone so much has been affecting me, so it’s time to get back to that. For one, it’s started to change how I am when I actually do get to be around people in person. I find I’m being a little less extroverted and I also start to feel awkward around people. I feel like the things that I say seem clunky and awkward these days. I worry I may sound like I’m speaking gibberish to them. I feel like I’m also not as great at picking up social cues as I once was. I feel like I leave most conversations a little worried that I said something awkward or weird. Even when I chat with people in person, I can’t help but wondering afterwards if I said something out of place, sometimes that makes me wish I hadn’t said anything, and wish I didn’t even leave the house.
That’s when I do get out. When I’m home, left with my thoughts and talking to my dog, I can get racked with depression and anxiety. Some of it is the disease for sure, but some of it is likely caused by being alone so much. Nighttime, as I’ve mentioned before, can be especially tough. My mind gets crazy at night, and anxiety, fears about the future, and remorse for the past keep me up. Day time can be a struggle too, with no job and no one around, I often get to the evening and I’m left wondering what I did that day. It leaves an empty and hollow feeling. Not contributing to something, anything, worthwhile can really make me question life and what I’m doing and why I’m here. It sucks to feel that way.
Harder to understand and interact
These days, whether it be in person or even when I see and talk to people on social media, I’ve started to feel like I don’t fit. Like I’m an alien visiting another planet. I feel like me and my dog live in this other world that we communicate with and occasionally visit, but aren’t really from anymore. Just the other day, I had some in person interaction with some visiting family and I felt off, I felt like their lives and mine are so completely different. I feel that way with many people. Different priorities, different views, different lifestyles. I’ve started to think that being left with my own thoughts so much has had a detrimental effect on me, and every day, it makes it harder and harder to understand and interact with others.
That’s really it, I think if I had to say the worst thing about having Multiple Sclerosis, for me, is the loneliness it’s caused and the effects that has had on me. I know I have a lot of other readers out there that are in similar situations, and as always, I’d love to hear from you in the comments. Are you alone a lot? How does it affect you? What do you do about it? If you’re feeling alone, as you can see, you most certainly are not the only one.
Were you misdiagnosed with something else before receiving a MS diagnosis?