Feeling insecure about romantic relationships

In what way?

You can delete the private details.

 

I don't have the energy to go into this properly but. In general, autistic people find the way that neurotypical people communicate to be very frustrating and annoying. This is often still the case if a neurotypical person has ME.

 

I came across a dating app designed for people with chronic illness and disability.

https://info.dateabilityapp.com

 

It's only available in North America.

 

In my case, I'm dead jealous of the skill and wish I could get halfway to the ease and economy many of them have!

Not a chance. Even after 60 years of practice, I still sometimes communicate as if I've been locked in solitary confinement and am not used to moving my mouth, and I'm simultaneously translating from another language to English.

I don't find other people's communication confusing, it's mine. I don't think in words and I've no idea in advance what's going to come out of my mouth. I've got much better at not saying something so inappropriate that it offends/ provokes/ upsets/ embarrasses, but when I'm trying to pass on something important, it's frustrating listening to the diamond-studded gobbledegook I spout.


That doesn't help @Hoopoe though. I still think it might be good to start by warming up your social muscles a bit, maybe by joining a group that does something you're really interested in. Even if you don't stick around because it's too exhausting or the group members aren't your type, the fact that you actually did it is a good for social confidence. It could be an ME group, if there is one; and sometimes you may be able to size a group up first by doing online stuff like attending Zoom talks or meetings.

Community groups are usually really nice, with a mix of people. In the distant past I did a couple of courses that were either a bit competitive for my taste (photography) or where I found a few social attitudes that weren't in tune with mine (art group in a posh area), but the people were welcoming all the same.

I'm sure there are other approaches if you don't like the idea, I'm only suggesting it because I've done it a fair bit. Never to make friends, the motivation was always learning and doing things I'm interested in, but I often do meet people I take to. Interest groups aren't always the best way to meet potential partners, but they'd give you a chance to practise the skills you need when you do.

 

@Kitty speaking is a bit of a problem area for me too. As my ME/CFS fluctuates, my ability to communicate does as well. How much I trust people also influences how well I can communicate. My speaking can range anywhere from a charismatic talk with clear ideas and effective communication to having difficulty stringing a sentence together and making myself understood in a feeble and insecure voice, with pauses and errors.

Yes it would be useful to learn some life skills as well. I'm still figuring out what actually feels good and interesting for me. I think I have a bad habit of trying too hard to hide the illness and trying too hard to fit in. This is maybe especially an issue for people who are more on the moderate-mild end of severity and are capable of hiding the illness for a while and pass as normal person who is a bit tired and quiet.

Your comments speak to me.

 

You don't have to name it, though. People at the music group I've been attending know I'm disabled (it's obvious), but none know it's ME. This week I turned up barely able to function because of brain fog, and in between laughing at myself or getting frustrated, I apologised to the tutor and said I was over-tired because I'd done too much the last few days. That's as far as I usually go.

With newish people I might have to say that I'll sit an activity out, but I don't see the need for detail. It's none of their business, and anyway I'm so bad at explaining that it wouldn't make sense, I'd sound self-obsessed, and they'd lose interest inside 20 seconds. Obviously it's different when you become friends; people I've known a long time do know it's ME, but by then I don't need to explain it. They've seen it.

I suppose people without a visible impairment might sometimes need to drop hints about a long term illness in a new social group, as a way of explaining they can't go on the full-day trip, attend the Christmas party, or whatever. But you get to decide what and how much you want to say. I don't want to talk about it because after 47 years I can't think of anything less interesting, but for others it might be important because they've experienced non-acceptance or bullying due to ME.

 

I feel like I have to explain because they can see on my face when the fatigue hits or the blood drains away from the brain and they will misinterpret it easily if they don't already know me well. And the misinterpretation is usually "he's signalling strong disinterest, he doesn't like me, he's upset and quietly brooding" or things like that. They misinterpret a change in facial expression as emotional signal according to their own insecurities.

I don't know what that it looks like to outside observers. I think it involves a loss of tone of the facial muscles, and being less mentally present, and a feeble voice.

Alcohol also seems to make the these muscles weaker and has a fatiguing effect.

 

Yes, they'll see you're knackered. At first glance the other possibilities are bored or depressed, but if you're interacting with someone, it usually doesn't take long to narrow it down to knackered.

You just need to decide how much explanation you want to give. I've always found a grin and "I get tired really quickly" is a lot easier than trying to explain ME. I've tried both, and ME has never ever been the better option.

I'm the wrong person to talk about this though. I'm in my mid-60s not my 30s, and people my age have the luxury of worrying much less what others think (and being much less willing to put up with eejits). It's surprisingly hard to remember exactly how you felt 30-odd years ago.

I know I wouldn't have realised I might be wearing an expression that combined autistic-blank with ME-knackered (zombie?), though, and that I hadn't yet learned enough theory of mind to understand that people might misinterpret it. I had both conditions but was diagnosed with neither, and as I seemed to rub along with folk anyway, maybe ignorance was bliss.

 

I can really relate to this @Hoopoe. " Many people with ME/CFS fake being well or hide the full extent of their illness because it's not socially accepted."
I know that on the very rare occasions I go out and see a group of old friends for coffee, I try to participate until I actually can't. My only strategy for dealing with this is to say in advance I will only stay for an hour.

I am dropped at the door and walk in with a stick and try to participate in conversation. The rest of my energy is taken absorbing the different surroundings. If I get to the stage when I can feel my head go whizzy, I know I've done too much and quietly try to request my lift home immediately.

I don't say out loud that I need to go because I'm unwell. I don't get the sense that it would be welcomed but that could be me, some sort of projection, or fear of the stigma around our illness.

edit:I've just lost some paragraphs I added on- ugh- too crashed to carry on now but will try later.

edit2: just a thought @Hoopoe- I was wondering about whether you could try a mindfulness class, not because you have a special interest in mindfulness- you could go to sleep- , but because you could participate in it while resting and and being quiet. At the ones I've attended we lay on the floor with eyes closed while te course leader led the session. There was occasional walking mindfulness but a quiet word with the class leader might head off any difficulties you might anticipate in this. That would leave energy for socialising naturally before and after the session and give you something to talk about if required - just a thought.

 

Small update: at least I can say with some satisfaction that I'm slowly getting better at having normal conversations and exchanges with the neighbors.

But I haven't actually been able to find any group activities that really speak to me, but did go to a small circus performance (it was okay). I was planning to join another event but misremembered the hour due to brain fog and also didn't really have the energy to go.

So things are improving but not as fast as I would like.

 

In terms of meeting a romantic partner and starting a relationship that could spontaneously happen any day depending on who you meet their interest and your receptivity. Maybe you have a particular person in mind and as I write this have already begun a relationship.

Learning how to have good relationships with others more generally and development of skills, how be a good friend and partner, if you have suffered abuse from those close to you or with power over you, this can require a lot of re-learning.

The social exclusion that is inflicted upon people with ME is profoundly damaging to us.

Re-learning can come in different phases full on re evaluation of everything, all your communications or quietly musing on your usual responses to certain interactions and whether you’re communicating as you would wish.

This daunting when your focus and energy is limited. But is very important. So excited for you that you feel physically strong enough to get out there and up your skills!

It might be worth it to check out some more information around autism and social interaction from actual autistic adults there is an abundance of advocacy out there to choose from, this may provide some useful insight from others on how they handle the extra pressures and difficulties. It might improve your confidence to know there are many people who have found ways to get themselves the accommodations they need and get what they want out of life as neurodivergent and disabled people.

I don’t think this will magically resolve your difficulties. But it sounded like you were both open to possibilities and hard on yourself from the neurotypical dis/ablest perspective. So maybe reinforcing other perspectives would help you find value in yourself.

Value you can share.

 

I understand that being disbelieved and misunderstood has profoundly damaged me. I've gotten over a lot of it, but not everything.

The social exclusion really bad too.

I need to relearn various skills. The neurological/muscle aspect of having a conversation and speaking is important in my case as well. I need to practice listening, understanding, having a conversation and speaking clearly, in the right tone, in a way that reflects my feelings, and with the right speed and rythm.

 

Had my first talk with the psychologist today. She said I come across as autistic adult, but that my story sounds like being deprived for a long time from social contacts and support (or something like that, I can't recall the details. By the end I was exhausted). Some kind of cognitive testing has been scheduled.

I could tell that she had "psych explanations" for ME/CFS on her mind but never pressured me. I think this may have been partially my fault because I didn't explain my symptoms so who knows what she thought I had.

 

Exciting news @Hoopoe!

Rest up now I guess X

 

I couldn’t remember if there was a different post you made somewhere on meeting people in general and wanting that connection but it being exhausting and if so where it is so apologies if this seems out of context @Hoopoe

anyway I’ve seen a few times on social media someone setting up a ‘silent book club’ for their area (I think based on another person posting about one that already operates).

the format is 30mins of discussion then everyone staying (in pub on this occasion) and whilst sitting together for company reading their books in peace. And then saying it’s comforting but good for the many who are overwhelmed by ‘too much’ interaction

I don’t know whether this would be worse or better for you as there is effort in reading and getting there but it’s just inspiration that maybe there are things people adapt that end up being popular with others they didn’t realise appreciate the same.

The following blog sometimes has some good ideas for inspiration that are ME specific, some of which maybe could adapt to social ideas to make bespoke to meet people perhaps? one on that theme is an ME one going on currently where there is a list of films people watch at the same time but don’t link up - just know others are also watching - I don’t know if there are other versions in other places or it would be exhausting to set up?

https://the-slow-lane.com/2023/10/31/film-fest-with-me-me/

 

Thanks for all the comments and support. My plan to learn how to socialize again has been set back by the cold season, which is taking away energy and making it harder for me to be comfortable going to events and places. I'm looking for options that are within my current limits. I'm still making progress in other ways though.

 

I met a person and we did something together. It was great. A bit awkward at times. We now have plans to do something again when the weather allows it.

I cried a little later because I hadn't felt like I was likable and my company was being valued in a very long time and no longer knew what it was like.

 

Hi, a small update.

I've made significant progress in improving my social skills and confidence. There haven't been any significant negative experiences either. I'm still having difficulty finding spaces with people of my age who share similar interests and views. I still feel painfully lonely at times and sometimes sad due to lack of good social interactions. In my heart I would like to have a long term relationship with but it's hard to know how that might look like in my current situation or where I might find a women that's interested in me as person (with all my flaws).

It's also difficult to tell how much of my problems in conversations are due to fatigability and orthostatic intolerance and how much is due to lack of skills and timidity. A part of the problem is also that I have few interesting things to talk about because my life is so boring.

I discovered ebikes as a way to increase my mobility and every now and then do bike rides with a new friend or the neighbor.

I've still got a long way to go. I've also had the painful realization that there hasn't really been any person that has been supportive ever since I got sick. My default expectation for social interaction is to not be treated very well.