Shameful vulnerability and the longing for autistic access intimacy

Content: This post includes mentioning of an activity that occurs in a sexual context

 

A while ago I got to try a new medication and even though I’m still very ill, it has a good effect on one of my most problematic symptoms. Now, when my heart doesn’t go bananas and pushes me into a horrible PEM (Post-Exertional Malaise, core symptom of Myalgic Encephalomyelitis) crash that I never recover from every time I feel a little arousal, I can have sex sometimes. Not often, not without it affecting my health, but sometimes.

One of the things that I’ve discovered is that I really like it when my partner strokes my back. My spine used to be very sore but nowadays it isn’t, and that means that the experience of having my back stroked changed radically. It turns me on, but I also like it in contexts that aren’t sexual. This isn’t complicated regarding my diseases, pain and disabilities, it’s not complicated for my partner either so in theory, this is great.

Practically? This was (is) a huge deal for me to admit, both to myself and my partner. This is shameful and just writing it makes me blush and the butterflies in my stomach go wild. Why?

For a couple of months I didn’t at all get why and honestly, I couldn’t really handle thinking about it either. However, it bothered me so much to feel so ashamed and not understanding why that it kept coming back to me. How can it feel so difficult to like having my back stroked? It’s hardly considered taboo or particularly kinky to me. As a matter of fact, I feel way less bothered by a lot of other stuff that I guess I do consider kinky.

Then it dawned on me: It’s about vulnerability. It’s the same thing coming back again and again. Admitting this is a sort of exposure that means acknowledging a part of me that I’m still struggling to deal with and don’t have words for yet. It’s the scared, traumatized part of me that fears being judged for who I am, for my perception and sensory issues. This isn’t just about what feels good, this is about who I am. About having everything that is me rejected, dehumanized and considered not valid. This is about being autistic and connecting with my autistic self, and that is a very taxing thing for me. It’s also something I’m longing for.

My partner is not a judgemental person when it comes to sex, and my fear isn’t that he will judge me for this. This fear is so much deeper, because it’s about taking the risk of not having my sensory experiences understood. My partner can very often understand me on an intellectual level, but I long so hard for the kind of validation I only get when somebody shares my sensory experiences. I guess I’m longing for autistic access intimacy, and – I’m hurting from the lack of it.

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A first step towards getting help to deal with my trauma

Content: trauma

 

The other day I started to listen to Come as You Are by Emily Nagoski. When I came to the part about trauma I was thrown into  a very specific emotional space that I have no words to describe. I fall into something dark and scary and the level of fear is horrible.

Because of this reaction, and because of a couple of other things that has happened recently, I did what I have avoided for so long. I took a first step towards getting help to deal with my traumas. I contacted a psychologist and asked a couple of questions in order to find out if she is the right person to help me.

Ever since I did this, I’ve been feeling so ashamed and one minute I hope that the answer will be no because I just want to burry this deep down again. This is followed by me checking my email over and over for a while and hoping that I will get the opposite answer.

One thing that I hadn’t really thought about is that now when I’ve started to put this emotional mess into words in a conversation with somebody else, it feels like I can’t go back. I’ve been craving comfort and safety for a very long time but since I’ve never really talked about it with anybody, it’s been possible to push it back under the surface.

Now, I don’t know what to do.

I do know that if I’m ever again going to try any kind of counseling or therapy, it has to be with someone who understand power and opression. It has to be with someone who understands LGBTQI and disability. It has to be with someone who understands autism, Myalgic Encephalomyelitis and harm caused by healthcare.

I suspect that I’m asking for something that doesn’t exist.

I just want to be allowed to be scared and sad without being brilliant

As I become more and more severely ill with ME, it’s getting more difficult to write. I can’t write that much anymore because it worsens my symptoms too much. Unfortunately, it means that I’m detaching myself from the world more and more, because my only connection with the world is my writing.

I’m thinking about this today, because I want to interact with my friends. I want to but I can’t grasp my thoughts, meaning I can’t say (write) anything analytical or smart. I want to tell people that I care about them, that I miss them, that I value them, but I’m so sad, so ill, so scared and so tired that I don’t know what to do with myself. So much of my social life is built on me saying smart things, and I have nothing insightful to say about anything today. It hit me so hard last night, that I’ve ended up in a situation where I think that I don’t have a right to talk about how hard my life is, and how sad and scared I am, if I don’t do it in an intellectual kind of political or philosophical frame. I’m trying to break free from this idea (that’s why I have this blog, I guess), but honestly, every attempt is making me so ashamed.

It’s not exactly helping that certain people are obviously terrified when I try to allow myself to be vulnerable. Not the people that I consider my friends, but some other people. Even though these are a minority, it affects me really hard. I caught myself daydreaming about being allowed to be sad and scared. It’s… I don’t know what. I’m sad and scared all the time, I’ve been terrified all of my life, and I still haven’t learned to allow myself to be sad and scared without feeling intense shame about it.

I want to write reflecting things about this. I want to write about how ever since I became ill, since it became more obvious to people that I’m disabled, it’s like people are blaming me like hell every time I’m open about how political decisions are making y life hell and how bad I feel because of that. But I don’t have the energy to follow my own thoughts. My head is a mess.

And I can’t even cry.

 

I Just Want to Be Safe

Content: This post includes thoughts on safety, fear, threats and abuse related to ableism

 

I hope I’m just having a bad day. Like, I really, really hope that this will pass soon.

Because I’m falling.

In some aspects I’m safer now than I was before, and that’s great and totally terrifying. When I’m finally a little bit safer, the thought of going back is so scary that I almost wish the temporary safety away. Because I can’t go back.

But I will be unsafe again soon. One of the bigger threats is on its way back. There’s nothing I can do about it. In a month, it’s starting again.

I can’t. I can’t do this.

My mind is preoccupied with the idea of ever feeling safe. People think that my highest wish is to not be ill anymore but it isn’t. Because even if there’s a cure for ME one day, I could still be ill again. I will still be disabled. In an ableist world, that means being very unsafe.

I just want to feel safe. I just want to live a life without the constant threat of abuse.