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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Dear Life, Dear Pride

Dear life,

I’m so sorry. I’m sorry about everything that could have been, but never happened. I’m so sorry that I fooled myself so hard.

It’s summer now, meaning that I’m reminded of the LGBTQIA community that I’m not a part of anymore, because I got too ill and too disabled. Not that being ill and disabled is something that makes me less queer, not at all. But being the way I am, needing what I need, means that it isn’t possible to be a part of neither Pride nor an LGBTQIA community.

I can’t physically be at a Pride festival, because I can’t leave my home. I don’t participate in community discussions online, because the little energy I have, I need to spend on other things. Most of all I can’t openly identify with my queer self, my past, my desires, because I have to stick to the straight narrative to survive. Yes, it’s about survival. I’m in a place in my life where my existence is depending on me putting up a straight show.

This means that every summer, I cry when I see pictures from different Pride celebrations on social media. I cry because I’m reminded of that what I thought was my space, somewhere were I belonged, has turned out to be something else. Something that isn’t for me.

Dear Life, I’m so sorry that I failed you. Dear Pride, I’m so sorry that I’m not proud.

Invalidating My Vulnerability

I’m scared, like usual. This time it’s because I’m about to apply for permanent income compensation and this is super difficult to be approved for, meaning that I have to prepare for many years of fighting with lawyers and doctors. It’s a process with a big risk of a permanent worsening of my disease (Myalgic Encephalomyelitis, ME) and it’s a very painful reminder of how vulnerable I am. Since so many people still don’t get how awfully harmful these procedures are, I want to write about this openly. I want to write about it to give people a better picture of what austerity does, since that’s one of the few things I can to to contribute to a political change. However, I’ve come to a point where I don’t think I can, because the reactions I get from people are so painful to read.

One of the most common reactions I get is that people give me advice I never asked for. Bad advice. Advice suggesting that I do something that is either totally inapplicable or very basic, meaning that I’ve already thought of it. This is terribly hurtful and even though I’ve spent a lot of time thinking about why and come to some conclusion, I’m still having a hard time grasping it. The other day though, something hit me: It’s about denied vulnerability.

When people give me advice I didn’t ask for just because I’m trying to describe and understand my reality, I feel invalidated. I’m trying to close in on my own vulnerability and fear, trying to articulate it, undrstand it, make room for it, and all that bad advice become an obstacle to that. Because if your simple advice actually were good solutions, then I wouldn’t be this vulnerable.

The abled world is constantly trying to deny the subordination and vulnerability of people like me, by pretending that disabled people and chronically or long term ill people aren’t treated as bad as we are. When people deny my reality to the point where I can hardly see it myself, it makes it very hard to deal with. I invalidate myself and can’t understand or process my feelings.

I live in a place where a lot of people still think that we have a safety net if you get ill or disabled. We used to have that but it has been crumbled more and more for around fifteen years and by now, there’s really not that much left of it. I grew up being taught that we have a safety net and unlearning that and realizing that no, it’s not me who’s ill the wrong way or not really disabled is a very difficult process. I’m trying to close in on my own vulnerability and make that elusive sense of exposure to danger more tangible and less confusing, but when people deny my reality, it gets too hard.

A Bad Parent

Sometimes (almost all the time), I feel like such a bad parent. I’m in bed all day because of my disease and there are so many things I don’t do as a parent. I don’t take my kid to school. I don’t cook. I never take him anywhere, since I can only leave my home during very special circumstances.

But what’s worse than all that is that I can’t handle my own feelings when he’s upset. When certain things happen to my kid, I relive all the times it has happened to me and my world falls apart. When my kid is overwhelmed or when I can tell that he’s not understanding a situation and therefore has a hard time coping, I feel the same way. Sometimes I fake that I’m calm as good as I can, other times his other parent is with him and then I stay in my bedroom and feel like shit.

Because of my disease, I don’t do much parenting at all anymore. I feel guilty and ashamed. I think about my kid all the time and try to solve things like how to find a good school and what not but for too much time, I’m not there.

I’m so sad that I didn’t get a chance to understand myself and learn how to help myself as a kid. Because when my kid is upset, I’m still a kid. Partly because of all the things I never learned as a kid. I didn’t know what it felt like to have your experience validated as a kid. I didn’t have anyone to ask for guidance on how to deal with all the stuff you deal with as autistic. I never felt safe.

I want to comfort my kid when he’s upset but just like me, he runs to his room and slams the door. He doesn’t want to be comforted when he’s too upset and of course, I have to respect that. But since I never allow people to comfort me either, these kind of situations turn into an emotional chaos to me. And I feel lika I’m the worst parent in the world.

Update August 11: Since this post, I’ve done some thinking and partly changed my mind. You can read my following thoughts here and here.