It’s kind of a no-win situation that I don’t feel like I fit in with people, but I also can’t deal with the isolation of being alone all the time.
Because I don’t expect to be able to work outside the home again (unless I get a part-time job at a library once I get approved for disability), I’m going to have to find a strategy to prevent being isolated for the rest of my life.
It doesn’t help that I need friends but I’m not in a good place for being a good friend right now. Realizing that I can’t work full-time again is a really hard thing to deal with and that’s getting me down. My symptoms are particularly bad right now because of the heat. And some snafus have left me without the medications that normally help me with managing my symptoms, so I’m not sleeping well (which in itself increases my symptoms) and I don’t have the pain relief either.
Nobody really wants to be friends with someone who’s too depressed to be much of a good friend in return. I care about people and I don’t want to be only focused on what I’m going through. But I genuinely don’t know how to be more of a friend when I’m depressed.
It also turns out that feeling like I don’t know how to “act normal” in friendships might be because of the disease itself. Apparently, there was a study that found that people with MS have changes to their brains that cause them to miss social cues and to misread people’s emotions. That just makes me feel like even more of a freak and like I should avoid people completely.
The depression is situational due to discovering that I’m not being able to work full-time. That was a pretty hard realization and brings a lot of fear with it. There’s also the fact that depression is a symptom that’s naturally part of MS because of the way the disease changes my brain. That seems like kind of a vicious cycle: MS causes brain changes that make me depressed but being depressed makes me less likely to maintain friendships, which in turn makes me more depressed.
I don’t want to be one of those people who’s always talking about my disease. And yet I feel like that’s who I am right now because I’m in a transitional phase of dealing with it.
Because this is a stage of my life where I’m coming to terms with my illness and applying for disability, it’s a really big deal. Honestly, it’s completely life-changing, almost as big as when I moved down here from Michigan four years ago. It’s hard to focus on a lot of other things when your life is going through so much upheaval.
Still, I need to find a strategy for what the rest of my life is going to look like. Where I’ll meet friends that I can see on a regular basis. I need to get out of the house and be around people I can talk to so that I’ll have something to talk about other than my illness.
I can talk about other stuff to people and I prefer to do so. (I only mentioned it once at my job and I just said so offhandedly in the last week I worked there when my coworker said she had an aunt with MS who was really sick.) But I need to find more people to talk to with whom I share common interests so that I’m not as likely to lapse into talking about my illness.
Sometimes I really regret that I backed away from my online group of moms I’d been friends with for more than 15 years. And I regret taking so much time away from Facebook, because even if I spent too much time on it and that was unhealthy, I did feel like I had more social contact. Though it was only virtual contact, it was better than none.
But where and how will I meet people now? When I’m at home, I get stuck in a mode of becoming almost afraid to leave the house. It’s not like people will be knocking on my door to hang out with me (and I’d probably freak out if they did.) And being home becomes a self-perpetuating cycle.
Church was an easy place to meet friends but I couldn’t really be myself around church people, so it felt like very fake or surface-level friendships. I could go to a church where I could meet like-minded friends like at the UU or Episcopal church. But those services are always on Sunday mornings and I have a lot of difficulty waking up in the morning. And in general, I’m not in a place in life where I want to go to any church at all.
But now that my kids are all older, I don’t have any organic opportunities to just meet new people otherwise. I could try looking at Facebook groups again but in a way that seems like it’s perpetuating the loneliness problem.
How will I meet the kind of friends I can just hang out with for an hour or two, who will drop everything to help me on occasion (as I try to do for my friends?) How will I meet someone who lives close enough to me that I can trust to be my backup person? I wanted to go to California for my 25-year anniversary next year (which now may not be possible for financial reasons), but I don’t even have anyone nearby enough who could check in on my kids.
I have things I’d like to do such as volunteering with a cat rescue group. But until the summer is over, I pretty much have to stay close to the house so I don’t end up in another relapse. In case it isn’t obvious, I’m really afraid of having another hospitalization like I did last year. And August is always the month when I’m most likely to have relapses.
Beyond just making friends though, I need to decide what I’m going to do with the rest of my life. If I’m on disability, how will I find meaning in my life? How will I avoid just being isolated and bored? I’d like to make some money (even if I’m only allowed limited earnings in addition to disability payments) but I really don’t want to keep doing freelance writing anymore. I am really burned out on freelancing, having done it for more than 10 years. But if I’m not a freelance writer anymore, who will I be? What else will I do?
I need to figure out who I’m going to be. How I’m going to have some kind of social life that won’t cost a lot of money (since I won’t have a lot of money.) What will make me feel like my life still has a sense of purpose. Right now that all feels like a big mystery and I’m trying to figure out a new identity. But at the moment, that sounds exhausting and I just want to sleep.