This post is kinda an addition to the one I wrote yesterday. The trigger for it was that a friend unfollowed me on instagram. Which is not his blame but it does triggers many things for me.
Ever since when a friend has left me again, I felt like it was my blame. I wasn’t interesting enough, haven’t showed enough what friend meant to me, haven’t shown enough interest in their lives or whatever.
Yesterday I fell in a dark hole again because of this. I feel worthless, boring, just not enough and that no one wants to be my friend anyway. The tactic I taught myself to cope with this: build a wall and be like “Okay, then I don’t want you either. I don’t need you.”
It’s hard for me to trust. Where shall I know that friend is serious with me? I always assume the worst. I was hurt too often.
I always feel like I have to give something special to make someone wanting to be my friend. And I don’t have anything. I can understand it; I am boring. I’m weird autistic and due to my chronic illness, my life is not special or interesting. Why should anyone wants to be friends with me?
I feel like, I want to give up on friendships. To only use social media now to promote my poetry and books. And not any further connections. Because why should I keep trying and getting hurt, when I can’t hold friends anyway?
I know, I actually should work this, but at the moment I don’t see a reason why. What sense does it make? Well, tomorrow I’m at my therapist again. I will talk with him about it.
(It seems I don’t even have spoons to talk about it properly.)
Making friends was always hard for me. And not only because I’m trans and rather wanted to play with the boys than the girls. But mostly because I’m autistic. I can’t read body language or facial expressions. When I was pre-school I visited a speech therapist, because I had pronouncing issues of certain letters just like “T”, “D”, “K” and “R”. Sometimes I even stumple over letters, speak too fast, or too silent and I was mutist (Selective mutism (SM) is an anxiety disorder in which a person who is normally capable of speech does not speak in specific situations or to specific people… Resource: Selective mutism-Wikipedia). At the speech therapist we also worked on recognizing facial expressions. I remember how she told my mum she should watch my behaviour because “it isn’t normal”. At this time autism was only known as Kanner autism (non-verbal, often in combination with an intelligence deficit) so it didn’t came up.
My autism made it very difficult to me to befriend people. When I was little I didn’t know how to go to a kid and start a talk. It was not like I was shy to ask. I didn’t know how to ask properly. Even though I watched them interacting with other kids, I couldn’t make up what those kids were doing different than me. It was their body language. Not only that I couldn’t read body language from others, I also don’t know what my body language shows. But it seems to be at least confusing for most people. Still today I notice how I often get weird glances from peoples in the street. And no, I don’t think it’s because of my punk style or cane. Because I do get those glances also when I’m at places where I shouldn’t stick out. But kids, and later teenagers, often told me that I was “arrogant, ignorant, selfish, heartless” etc. I don’t know what they mean. I always try to be a nice person but I always get misread.
Today I still struggle a lot to befriend people. I don’t know how it works. But I’m also a burnt child (idiom). So often I had “friends” who suddenly turned their back on me and never spoke to me again, or who pretended to be my friend only to tell nasty lies behind my back. I was bullied in school. Sometimes even physical. Because of all this, it’s very hard for me to open up to a person, to trust them and to share personal things. I’ve build a wall. I’m tired of getting betrayed and hurt. I don’t know who I can trust and who not.
Another big problem is, that I don’t need much socializing as told here. So friends often took it as “you just don’t want to”. And when I came back asking them how they were doing, I got “Now I’m good enough for you?” People don’t understand. It’s exhausting. Yes, I like to have friends but on the same moment, I don’t want to, because then I have to spend time with them so often. It’s a misery and I feel stuck.
But if I got interested in being someone’s friend, I also can get kinda clingy. As a kid I often was told I was annoying. But all I want is to show, how much I like the person and how much I want to be their friend. Another difficulty for me is, I can’t tell if the person really wants to be my friend if I’m not directly told. So I often keep trying and trying until the person is really pissed at me.
Friendships are fucking complicated for me. But maybe I’m not made for friends…
Yesterday I had a meeting with the social help, household help and autism assistance. We came to conclusion that I get a helper for household for 2h per week (which I find a bit less since for grocery shopping you need already an hour) and a testing period with the autism assistance to see how much and what support I need. So far so good. What has bothered me a lot during the conversation, is that they always said I should do this autism specific therapy to “remedy the social consequences of autism” and to “learn structures”. Well, I don’t need that! I can do plan things very fine. I just can’t do my household because of chronic pain! The guy from social help then said “Well, then you are wrong here because this would be a case for care.” Oh come on! Don’t pretend this is the first time you heard me saying this! From the first day when I made the application for ambulant assisted living I very clearly communicated what kind of help I do need! Even my therapist wrote a report what we have worked together and that selfcare, structures are not my problem!
About to “remedy the social consequences of autism”, it would be nice if you would listen to the actual autistic person! I told them several times that I do not want and need “more social contacts”. I am happy as the way it is. Their argument: 3 people say something different. They stick on the report from the (incompetend) doctor from social psychiatric service and the report from MDK and the last person from “help for care”. Again, listen to the actual autistic person! It might be that you as neurotypicals need a circle of friends and daily social contact, but that doesn’t mean that it will work for me too.
I’ve always been a loner. Since I was in kindergarden I never had desire and intentions to connect with other children and make friends. I was more happy to play alone; read a book or do a puzzle. 10 years ago I do had a circle of friends and it got so bad that one day I collapsed and vomitted. Just because of the overwhelming social stress. That was when I cut everyone out of my life. It was an act of selfcare. But people don’t understand it. In the past I got misdiagnosed with social phobia and was called an asshole and arrogant by so called friends, because of my loner behaviour.
I don’t have social phobia. I’m not afraid to go out and meet people. I find it super strenous, stressful and exhausting. Yesterday we were 5 people, including me and my mum, and talked for 30 minutes. In the end of the talk, I felt how my brain was shutting down. It got more and more strenous to follow and process the conversation and I got semiverbal so I only responded with “yes” and “no”. When I was back home I slept for 2h to recover from it. People are so draining. They literally suck my energy off very quickly. I’ve always been a person who has a need for a huge amount of alone time. It is perfectly satsfying for me to only meet my friends in person 1-2 times a year for a few hours. The rest of the time I love being home alone. It sucks and makes me sad and mad that neurotypicals don’t understand that I do not have the same huge desire to spend time with social contacts like they do. And I find it quite cross-border like to say that I have to need it like other people. It’s a shame that being an introvert and loner here is still seen as form of menatl illness. I do not need a cure. Or to “go out more and doing stuff with friends”. It’s exhausting and literally makes me physical sick. It also is poison for my tumour disease. Because stress makes it get worse.
I remember years ago when I had to go to the psychologist to get my invalid pension. She asked me if I “don’t get bored” if I’m staying home all day. I looked at her and said “I don’t understand the question.” I still don’t. Why should I get bored? I have enough to do here and am happy with my computer, books and TV. Why don’t people get this that I am happy being a loner?!
Wrong Planet Syndrom
Sometimes I think
people misunderstand me
so they just have something
to complain about.
Sometimes it feels like
we talk in different languages.
Both humans, but still so different.
It feels like
I’m on the wrong planet.
Like the Enterprise,
I try to discover new cultures
but it seems
I got lost.
I’m lost on the
where no one
31.01.17 © LJ Meindl
Today on my way to physiotherapy I came across a barrier in my way. Roadworks were stopping me from walking my usual way to physiotherapy.
For a non-autistic person this would be not a big deal. But for me, it means stress.
Now I had a problem. I stopped and started to think about how to solve it. It was sure, I had to take a different path. But this costs a lot of power for me. Because every little action I’m doing, I have to plan. Have to go through and play it through in my head before I do it. So I had to go through the exact way that I have to go now. Walked it through in my head before I started to follow my thoughts. I walked very slowly, making sure I used the correct path. Stopped when I crossed the street, looking for cars. More stress, more power needed. While doing this, I also had to remind myself constantly that I needed to buy something after physiotherapy that I should not forget about. My head was already full of informations that I had to process.
Small talking at the physiotherapy and concentrating on the exercise.
“Don’t forget to buy your things afterwards! Oh, and you need to make new appointments!” Breathe and exercise.
This is how I have to do all tasks I’m doing. It starts in the morning with washing my face and brushing my teeth, with putting on clothes and so on. If I don’t strictly focus on what I’m doing, I get confused. Non-autistic people do this automatically, they do not have to think about every small step they do. But for me it’s necessary.
Often I found myself in the kitchen instead of the bathroom, just because I didn’t really focussed and my brain did a jump to a different thing I wanted to do later.
That’s what my every day life looks like. And that’s why I often, better say always, listen to music. The right song with the right beat can help me concentrate.
lately in much stress here. Now after my name and gender change I have to run to all the offices to get my papers changed. Also now I finally can start applications for new things. Next week I got an appointment to open a bank account for me. Yes, I didn’t had an own bank account. To this day my mum was managing and still do all my financies. I never could deal with numbers. I have troubles to understand the working with money. Like I can’t plan who much I need for a week. So I don’t know how much money I have and how much I have to pay for bills, so I can’t count how much I have back then to live.
But now I finally want to start this together with my mum.
Another thing I did, was filling out an application for personal budget. That is support money that I can use for helpful things that should make my every day life easier. I’m planning on to hire an assistance who helps me with grocery shopping, my household and takes me to doctors appointments and social help and stuff. Until now my mum does this all for me. She also helps me to use public transportation since due to my disability I need help to enter/leave train, bus etc, and also helps me if there come sudden changes into public transportation. In this situation I’m lost without help, because my brain just get into shutdown mode.
So for this I had an appointment with a doctor from social help who should check what help I need. He was totally ignorant and incompetent. We brought all my medical reports, he knew I get permanent invalid pension and that I take strong painkiller for my chronic pain. So, nevertherless he told us that he “doesn’t understand” how I can’t do my household and all. I even had to tell him my daily routine where I told him about intense pain and the rest I need even if I don’t leave my home.
His assistant was not even better. She kept asking why I don’t go to therapy in autism center to “learn” how to do my household. Not even that she completely ignored all my disabilities, she really insisited that my autism would be treatable! My mum and me told them that we were at the autism center the counselor has sent us to the autism assistance because this is what we needed. The only “therapy” they do there is for socializing, like how to begin a talk, keep it up and become friends and so on. And I can do that pretty well. At least online ;)In the end she looked up a therapy and diagnosis from 10 years ago, social phobia. I then told her that it doesn’t matter because it was a misdiagnose what was refuted by the new autism diagnosis. She then said “Social phobia, autism, whatever you call it, it’s just a diagnosis.” I almost forgot myself! That she doesn’t know the difference made me so mad! Social Phobia is acquired and treatable whereas one is born with autism and it’s treatable!
The doctor also asked me about my transgender therapy I’m still doing. I don’t know what this has to do with that I need an every day life support? In the end he wanted to do a medical examination on me what I refused because I think from the medical reports, my personal description of the symptoms my disabilities and what I’m struggling with, should have been enough. Also I had the feeling he only wanted to see a transgender body.
He was a very unsympathetic person…
You see, I have a lot of stress here and have to fight again for my needs. Why does they make it so hard for people with disabilities to get them the support they need to have a lifeworthing life? Life is already short enough, especially for chronic ill people, so why do they make it even harder?
I wanna live
So many dark times
I’ve went through.
So many pain and fear
in this short life.
But, I never given up.
‘Cause I know
how to fight,
how to survive.
I wanna live
my life to the fullest.
I wanna travel
and discover adventures.
Nothing can stop me!
Not the daily pain,
not the social difficulties.
‘Cause I know
how to fight,
how to survive.
I wanna live.
Often I get told,
I should not overdo it.
But, I have nothing to loose.
I wanna live,
and I will live!
© 13.07.16 LJ Meindl All rights reserved.