Being my...self? Or, hanging a wet blanket out to dry.
May 16, 2016 8:02 PM   Subscribe

After years of isolation and with no clear sense of self, how do I start and maintain real, substantive relationships, both romantic and platonic? I've tried Meetups, wine and art nights, etc. Help me avoid becoming a hermit.

Most will know from my history here that my past has been difficult. I have cerebral palsy, the most bothersome consequence of which tends to be an extremely spastic, hoarse and breathy stutter. I have my more fluent days, but most of the time it's bad. Bad to the point that I don't really identify or feel close to other members of the ( very large and active) stuttering community. They all seem to have an easier time of communicating and...existing, living far more productive and optimistic lives.

The stutter ( if you can call it that) has kept me from finding a job, but perhaps more importantly, it's meant that a normal, back-and-forth relationship of any kind is something foreign to me. Any interaction more than a few consecutive minutes in length leaves me feeling suffocated, and like I've spent an hour at the gym. I'm basically done for the rest of the day. So now, I spend days at home, waiting fo

I've tried everything: meds and supplements, very expensive, well-reviewed speech and psychotherapy, repeated exposure to intensely social situations... nothing helps. People have suggested the use of an aid or tool (iPad, writing stuff down) but that would just feel weird to me and the people who know me after having grown up without it).

Because of this, and because of my less-than-social childhood, overprotective parents and the general experience of disability, I got used to living a very small life. This was fine when it was buffered by school and college, but since then, I've gotten used to the idea of being a hermit, and that scares me.

But then, I don't know what else to do. Living " with myself" has impaired my ability to connect with people. I never seem to become animated by anything other than deep, heady, emotional topics, and I find myself coming across as incredibly depressing. I can't talk "about" anything with anyone. My usual strategy when I need to mingle is to go straight down a list of small-talk topics. Once those are exhausted, I feel lost. It's probably telling that all of my "friends" have been incredibly extroverted, talkative people, who lose interest after the 10th conversation about how hard things are for me. Which brings me to my last issue...

I've faced a shit-ton of rejection, especially in the years since college, and especially from the straight, masculine men I admire as an insecure, emotionally underdeveloped gay man.

Mostly, people just never initiate anything, even on Facebook, etc, but with two people in particular, I was told outright that we had 'drifted' or that I was a source of stress for them because I was being dramatic or always backed out of, say a coffee date. I have an incredible amount of hatred and resentment toward these people that I can't seem to let go of, no matter how much meditation or refocusing I try to do. I hate the sensation of having lost a part of my past, and I feel like I'm the kid sitting by himself at lunch, all over again.

I feel like I'm too much of a weight on the world and I don't know what to do. How do I change, before this develops into fullblown agoraphobia?

Note: Please refrain from suggesting I pursue therapy further. I can't afford it, it hasn't been at all helpful where I could, and it's often made things worse. I'm looking for strategies, tools, and anecdata. Also, I realize that this question is along the vein of many of my others, but those were seeking professional advice, while this is personal.

posted by marsbar77 to Human Relations (21 answers total) 17 users marked this as a favorite
Have you spoken to others who've lived with symptoms like yours, and been through similar experiences? I think you might find comfort and relief in finding a forum - ideally an IRL forum - to express yourself, and talk about this and process it, where people might have a ready understanding of at least some of what you've been through. You may make some friends, may not, but it would be a place to start to make sense of things, and a chance for structured, regular contact. I'm thinking maybe a peer support group, something like that.
posted by cotton dress sock at 8:15 PM on May 16, 2016

I think many of the avenues I might suggest you've already ruled out. And because I don't know what it's like to live your life, I feel like any of my suggestions are, what used to be called, "Out of my Depth." But, have you thought about writing professionally? Telling your story from your perspective but not as a vent for yourself, but as a way of showing the world who you are? Deep, personal and compelling stories and observations are what people crave in a world that is too fast, too angry and too impersonal. There are a lot of publications that you could pitch ideas to that would be interested in hearing your perspective for their readers. And I'm not talking about a blog either. Or Wikihow or anything like that. I mean, ink and paper publications that people have to take time to read and absorb. In this way, you can to some extent, control how much you tell and to whom. I think those publications would be interested in hearing your story and how it could be of benefit to their readers.
posted by CollectiveMind at 8:18 PM on May 16, 2016 [2 favorites]

Response by poster: I guess- but not to threadsit, just to add this as a corollary- I guess I'm also looking for how to expand on what my story *is*.
posted by marsbar77 at 8:20 PM on May 16, 2016 [1 favorite]

You say that using some sort of communication aid would feel weird to you, and to everyone who knew you growing up without one. I don't in any way mean to discount your own preferences and life experiences... but you have shared a lot about how you've felt isolated throughout your life, and perhaps this is part of it.

Would you say it would be weird for someone to start wearing glasses for the first time, or to start using a wheelchair after struggling to move slowly on foot? What if you could conserve mental and physical energy by using a communication aid? What if you chose when to use it or not, and didn't use it with people who are already familiar with how you speak?

Again, the choice is entirely yours, and shouldn't have to be an all-or-nothing, always-or-never situation. The way you've described things, though, you need to try something different, even if it seems weird at first.
posted by St. Hubbins at 8:31 PM on May 16, 2016 [8 favorites]

There is something about this question that makes me think of this essay I heard on a podcast earlier this week. It isn't your situation, but it touches on some of the emotions you express.Well worth a listen.
posted by KMoney at 8:41 PM on May 16, 2016 [1 favorite]

I would be looking for a workaround that played to my strengths. Would it work with your cerebral palsy to learn sign language? Then you could hang out with other people who sign and your stutter would be totally irrelevant.
posted by aniola at 8:58 PM on May 16, 2016 [2 favorites]

I apologize because you are clearly going through a hard time, and this is going to sound unempathetic, but this struck me:

Once those are exhausted, I feel lost. It's probably telling that all of my "friends" have been incredibly extroverted, talkative people, who lose interest after the 10th conversation about how hard things are for me.

I am one of those extroverted, talkative people, and this has been a problem for me in the past. It's not that I don't want to talk with my friends about their problems, but I have had friendships with people where it started to feel like all we were doing was talking about their problems, and that gets overwhelming after a while, especially if there's not much I can do to help. And especially if I feel like the person is not that interested in what's going on with me (which is often the case in these situations) or if we don't also have fun together.

I know you need people to talk to, but it's the rare friend that can go through 10 conversations about the same problem. You said you have tried therapy and it didn't help with your speech issues, but what about therapy to address your loneliness and isolation? If you have someone to talk to about the heavy stuff once a week or whatever, that might make it easier to talk with people about other things.

As for how to talk with people: what are you interested in? What are they interested in? Find out. I bet the iPad method could work with new friends - I would be intrigued. And hey, if you like talkative people, then use that iPad to ask questions and just let them talk and talk. :)

As for where to meet people - what about activities where talking can happen but is not required? Volunteering? Sports? Art classes? The perennial mefi advice is to find an activity that will put you in contact with the same people on a regular basis, and I think that could work well for you, give you a chance to build up some comfort with people before you start talking or writing with them.
posted by lunasol at 10:43 PM on May 16, 2016 [13 favorites]

An online support forum for people who share your diagnosis could be just great. And I'd encourage you to perhaps become a member of an online forum for your hobby, too. That way you have one place to get and give social support, and another place to exchange information that isn't solely focused on your health. And if you don't have a hobby - this might be a good time to figure out something you like and enjoy doing. Practice in a hobby is both self fulfilling and gives you a good topic to connect with people about, both people you already know and people who share your hobby. I have learned a lot about myself from my own daily hobby.

I want to be gentle with this part of my response. You are closing a lot of windows in your question, ways for you to perhaps make some progress and to connect with people - you don't want to use an iPad, you are not interested in therapy - and while I understand and respect those choices, I wonder if you might want to consider making an appointment with yourself to reconsider these choices, in maybe two months or so. And perhaps watch yourself, to see if closing windows seems to be a pattern.

Do you journal? Writing down your feelings and thoughts can be very helpful, both in the moment and to use to help you assess how you're doing. It can be hard but very instructive to read through my journal. Sometimes I see that I am doing better than j thought, that I am making progress. Other times I am able to see patterns in my thoughts and actions through my writing, patterns I want to change. Journaling might be helpful. You are a good writer.

Best of luck.
posted by sockermom at 11:19 PM on May 16, 2016 [4 favorites]

Try some meetups where the goal is a shared activity. Rather than going out with the goal of meeting people, go out with the goal of making your life bigger and more interesting. Maybe something craft focused? A chess club? Learning a computer language / playing with arduinos? As a plus, this'll give you something fun to talk about when you do choose to talk =)

Yeah, you could do any of those things on your own, but I think that if you see the same people week after week, you might start getting more comfortable with them, and they with you. In my experience this takes months, so don't give up after the first one. Talk when you want to, focus on the activity when you don't. And if you do talk, have some bet with yourself about the ratio how many positive comments to negative comments you make.
posted by Metasyntactic at 1:57 AM on May 17, 2016 [1 favorite]

Given how well you write, I assume you already have a journal of some sort. If not, definitely take the suggestions to start one! When you write about your life, make a point of spending some time being positive. I've found that the story I tell myself about things in my past directly shapes my remembered experience of them. I could take the same thing, frame it two different ways, and either would become "true".

I see (at least) two possible benefits to this:
* Helping to change your view of yourself
* Give you practice not being a wet blanket / thoughts to share with other people.
posted by Metasyntactic at 2:03 AM on May 17, 2016

I have a friend with a disability similar to yours, and he is EXTREMELY active on Facebook. He posts about films he's watched, books he's reading, new music he's found. He posts about his projects, he posts when he feels very lonely.

If most people were doing this I'd probably unfollow them, but this guy I don't cause I never get to see him (not being able to go out much and not having much energy/stamina when he does). Also, over the time he's been posting he's generated this smart, funny, clever writing personality, and it's lovely to read. It didn't come to him suddenly, but posting/writing more has made him good at it.

Can you engage yourself a bit more in social media? It's not great for everything, but it IS good for staying in touch with what people are doing who you can't/don't see very often, and it sounds like you're that for a lot of the people in your life. I know you say people don't initiate stuff much with you, but maybe that's something you need to do more yourself. Start conversations! Post about cool stuff! And if you need cool stuff to post about, the MF frontpage is usually good for that :)

One last thing: this I have an incredible amount of hatred and resentment toward these people worries me. Carrying around anger is like carrying around a radioactive lump in order to give it back to the person who left it near you. You'll do more harm to yourself, and it's not worth it. Let it go - learn any lessons you can learn from it, and then move on with your life on your own terms.
posted by greenish at 3:45 AM on May 17, 2016 [9 favorites]

Have you thought about signing up for a class of some kind? Or joining a group where the object is to do something, rather than talk? I mention a class specifically because it might help get you out the door the first N times (or at least it does for me). Meetups often are "we are people with similar interests who are going to talk about our interest and drink alcohol rather than do this activity we are mutually interested in".

I too was thinking a writing group could be a good idea in that it gives you opportunities for self-expression that don't involve talking. Or an art class. MOOCs often have local study groups.
posted by hoyland at 5:02 AM on May 17, 2016

What about a dance troupe? My aunt, who is paraplegic, is actively involved in propeller Dance. They welcome ALL people with ALL types of ability. And the dancing is so moving and beautiful.

This is out of Ottawa - but do you live in a large enough city to find something similar?

Propeller Dance
posted by Dressed to Kill at 5:22 AM on May 17, 2016

Best answer: I am autistic and have a limited amount of verbal spoons. Honestly, it sounds like you're trying really really hard to do things "normally" (ie. the way an abled person would, without accommodations) and you're frustrated because it's not getting you what you expect (reliable friends). In my experience, most abled people are absolutely terrible at being friends with disabled people. Them ditching your friendship completely because you have to cancel coffee dates, them not reaching out to you in ways that are accessible to you, them not willing to listen to the bad sides of the disabled experience, yeah I've been there too and it sucks (especially with the straight dudes ugh they're not worth your high regard if they treat you that way). I think it has something to do with us wanting reliable friends and them expecting friendships with low commitment; we simply don't have the energy/luxury for multiple shallow friendships the way they do. (Obviously I am generalizing hugely here.)

Most of my friends are disabled in some way because they're the only people that stick around. My closest friends are the ones I talk to via IM frequently. I know many folks who rely on social media for their social interactions. Does your city have a disability justice scene or community? It might be nice to interact with folks who understand the experience of disability, who are ready and willing to accommodate, instead of feeling all "square peg round hole" all the time. I've found that these groups skew gay/queer/trans in my area, maybe it's the same in yours. I have seen immense patience with communication disabilities and AAC in these circles, as well as more patience with cancelled/adjusted plans.

You say you've tried everything but then you go on to list ways you've tried to change yourself. What about working with what you have? What about figuring out your strengths and building a social life that leans more on those? Yeah AAC feels weird at first and there's a learning curve so it can be super frustrating but why not try it and see how it goes? It sounds like you're still trying to "overcome" your disability instead of accepting your whole self as a disabled person (radical acceptance) and that makes the experience of ableism even harder.

It's easy to be a wet blanket when you feel like something is wrong with you, that people are rejecting you because of something you've done or because of something you are. What about reframing it as: there is nothing wrong with you, people are rejecting you because they can't handle your experience and that is their flaw not yours, you should not have to shrink yourself down or make yourself more palatable to have friends. There are people who will care about you as you are but they may not be the types of people that you've been chasing after. In my experience, the order has been: find acceptance, find community, find friendship.
posted by buteo at 6:10 AM on May 17, 2016 [31 favorites]

Buteo sounds so wise. I don't have a disability like this so it's hard for me to speak to it.

This stuck out to me:

"People have suggested the use of an aid or tool (iPad, writing stuff down) but that would just feel weird to me and the people who know me after having grown up without it)."

In this example it sounds like you've decided that not feeling weird is more important than potentially connecting with people. But, it sounds from other parts of your question that connection is what you really want. Perhaps you could decide on your priorities for a couple months and make a plan for how to live them out. These don't have to be part of your permanent identity. If your priority is to communicate with potential new friends, then you'd focus on finding those people, meeting them and communicating with them (whatever it takes). If your priority is to be around only people who affirm you as you are, you would maybe spend less time on some relationships or recognize that it's okay for some relationships to end. If your priority is to talk through your experience, share online or in a group. When you make choices about these things, check with yourself about your priority. Be gentle and celebratory if you act from your priority, regardless of the result.

From a practical standpoint as someone who likes to be supportive, knowing that there's a limit to a vent-fest helps.

I think also you are just fine to be in process. Your story is created while you live and share it. You will change over time. That's normal--learn, grow, change your mind, try things out.
posted by ramenopres at 6:31 AM on May 17, 2016

You sound a lot like a co-worker of mine. What's helped her is getting involved in environmental and animal rights groups. Maybe not your thing, but causes like that usually have an online and a meeting aspect. People also make friends through online writing groups and courses. The Internet Writing Workshop is free and it can be wonderful; but it doesn't have any official face to face meeting, so possibly an online college course that actually meets once in a while? I suggest writing, specifically, only because I get the sense your eventual career will have something to do with written communication.

I do think online, as sockermom has suggested, is good, especially because face to face meetings have logistical problems for you. But if you don't meet in person at all, you may come to feel that successes you have interacting online are limited to online. (You already have success here-- people respond to you, don't they?) If you could meet in person sometimes, and then continue/maintain those relationships online, I think you might be able to case a wider net. And as an adult, you do need to cast a wide net.
posted by BibiRose at 7:33 AM on May 17, 2016 [1 favorite]

Response by poster: These are all such great answers. Thanks everyone. I understand the points made about radical acceptance... but that's my problem, you see. I straddle the boundary between normal and disabled and so I fear that I'll always want that "drinking-buddy-bro" experience or to be able to go to a movie and out for drinks, after etc and have people enjoy my company in a laidback way. Maybe I'm a bigger victim of ableism than I realize ( or want to let myself believe) but...still...
posted by marsbar77 at 8:02 AM on May 17, 2016 [2 favorites]

Best answer: Would it help to see how others are doing? I saw this yesterday on facebook and then I read your question and thought you might enjoy it.

Carly Fleishmann has a new non-verbal talk show called Speechless. In her first episode, she interviews Channing Tatum using an ipad with Siri reading the questions.
posted by CathyG at 8:17 AM on May 17, 2016 [1 favorite]

I think you have 3 issues going on here: Social skills, self acceptance, and the fact that living with disabilities is, in fact, hard.

Social skills is a skill. Meaning you can learn, and practice, and find out what works for you and the people you want to hang out with. Figure out ways to have cool conversations! Your '10 small talk' list isn't a bad start, but figure out how you can open it up some. "how was your day?" in the USA is usually a 'closed question' =a short answer along the lines of 'ok' or 'fine' or 'ehhh' whereas questions like "what did you enjoy about your day and why?" are a little more open and free to let conversation flow.

And, of course, the classic book How to Win Friends and Influence People

“My popularity, my happiness and sense of worth depend to no small extent upon my skill in dealing with people."

Self acceptance. Don't let conversations be about how hard things are for you. Once or twice (and standing up for what you need!) is fine, to explain things. 10 is not so cool. How can you change your life from "I'm a guy with this disability' to "I'm a guy who has done w, x, y, z, DESPITE having these difficulties?"

Can you find a job that doesn't require verbal talking? Online tech support/customer service, online suicide prevention, entering closed captions, learning sign language and translating that, coding, accounting, assembly and tech repair/mechanics, cooking, art, are all some jobs that I think require little to no verbal communication. Can you volunteer at an animal shelter? Walking dogs and petting cats is fulfilling and provides needed attention to the animals; dogs don't speak English and cats don't care.

Nobody Is Normal. Everybody has something in their life that they struggle with, wether it is obvious or not. I freely admit your issue sounds harder to live with than mine and most other people's issues, but we all have issues. So what if I need glasses and Stephen Hawking needs a wheelchair and voice synthesizer and your cousin needs a artificial leg and that guy needs antidepressants? So what if you feel infinitely more comfortable using text to speech or online messaging or sign language or an etch-a-sketch or a pen and paper?

Sure, some people will judge you. Those people are asses and not worth your time. Personally, I think it is stronger to get help, find better ways to do things, do whatever it takes to actually succeed than to beat your head against the same old wall time and time again. The wall will win that fight, but you and a door can work together to get something done.

You can work with (and or around) your resources and issues to achieve what you can... Find the methods that take the least spoons ( and do what you can to improve your life. Maybe getting momentum (Doing something, anything to get you out and about) will lead you to being able to snag more spoons in a day, or maybe you have what you have. Either way, you can work out something, I'm sure.
posted by Jacen at 4:59 PM on May 17, 2016 [1 favorite]

I hear that you would feel weird using an iPad, but just as a data point, my able boyfriend has a good friend who is deaf. When they hang out in person, they use an app on her phone to type to each other, trading it back and forth, since he doesn't know sign language. It's slower than "normal" conversation, but they both seem to enjoy the friendship and each other's company, and this works for them. I think if you are making new friends and you start out this way, they won't find it particularly bothersome--that will just be how they are used to talking to you. Furthermore, they can speak out loud to you, and you can respond using the iPad for longer phrases, and your voice for things that are shorter or easier for you to speak. As an empathetic able person, I would want to figure out how best to communicate with you, and would feel comfortable with whatever was best for you.

I do think that you should probably focus on having more to talk about than the difficulties going on in your own life. While I am happy to discuss things with my friends when their lives are hard, I have also found that if the majority of our conversations were about these difficult things, I tend to want to see them less. Your options aren't limited to either small talk or talking about how you're doing--do you read lots of articles online? Talk about them, or ask a friend if they'd be interested in reading something with you and talking about it (maybe via IM or something?). Do you watch movies? Talk about the tropes and interesting plot points in movies you've (both) seen. Books? Music? Philosophy? History? Politics? There are lots of things to talk about where you can discuss your opinions, without it being small talk or how your life is going. These things build intimacy and camaraderie and also provide a respite from heavier conversations so that people are more interested in having those heavier conversations with you generally.
posted by Illuminated Clocks at 5:27 PM on May 17, 2016 [1 favorite]

Sorry if I missed it somewhere and it's already in here, but are you only looking for in person relationships? Lots of my very close friends are spread out across the country and so I text them almost every day (even the one I live with). We get some face time, but texting is the main source and certainly doesn't feel strange to any of us. (Then again if you're looking for something for in person this might not apply.
posted by raccoon409 at 5:31 PM on May 17, 2016

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