I keep thinking about what I wrote the other day, that social interactions are so hard, for so many reasons. One thing that I didn’t mention is that interactions can lead to intimacy, and it can be intense. Too intense to harbor. There’s no way of knowing which interactions that will be too intense, too good, too scary. It just happens, and I’m never prepared.
Honestly I don’t know which force is the strongest, my fear for intimacy or my craving for it.
Intimacy is difficult because I tend to not understand what kind of intimicy I’m experiencing. All I know is that interacting with someone feels good and I want more. I want to be closer. But in which way? That’s not always obvious. Sometimes it’s obvious and comparatively uncomplicated, but all the times when I don’t know what the longing for more of this person is – it scares me. If we met AFK, would I want to kiss you? Touch you? Confide in you? Talk about autism or philosophy? Be comforted by you?
I don’t know. And that scares me. And of course, I don’t know what the other person feels, if they experience any sense of intimacy at all. That scares me even more.
Recently, someone asked me to show myself to them. Not that much, just a piece, but an important piece. So I did. It was scary and energy consuming but oh so good. I want them to ask me for more. I want to ask them for more. But I won’t. This person did probably not understand how affected I was from our interaction and I won’t tell them, because that would be to cross a line I have no intention to cross. I hid behind theories, or maybe theories were what made the intimacy possible. I don’t know. All I know is that the interaction was difficult but felt so good and now I want more.
I don’t know if this is something particularly autistic or not. It makes me feel ashamed and that’s why I’m writing it. After all, this is a place where I write about shameful issues.
In this post I will discuss sexuality, desire and arousal in relation to the disease ME/CFS. There will be no mentioning of explicit sexual activities. I’m writing this because I’m trying to figure some things out, please do not give me advice on how to practically solve the problems mentioned. If you find this an odd request, you can read more about why getting advice is an issue to me here.
The problems with arousal and ME
The core symptom of ME is that any kind of exertion gives me a dramatic worsening of symptoms called PEM (Post-Exertional Malaise), and my hypermobile joints cause me higher levels of pain for several days, this includes activities like having sex. It’s a problem during these days, since it makes me even more limited in what I can do and the symptoms make my suffering worse. It’s also a problem in a longer perspective, because my ME is severe and I’m going from one episode of PEM to a new one, and I don’t recover completely between the episodes. According to my doctor, this is probably the main reason for why I’m getting more and more severely ill. For every activity that I want or need to do, this is something I have to consider. I have to ask myself if an activity is worth the following PEM and the increased pain.
When it comes to sexual activities, there’s an element involved that makes it harder to make a conscious decision: arousal. Sexual desire and arousal makes me caught up in the moment. Before ME and the worsening of my joint pain, this was a good thing. I want(ed) to be caught up in the moment, that’s one of the nice things about sex. I analyze most things in my life thoroughly, and engaging in activities that make me stop thinking so hard is a very welcome break. But when it comes to sex nowadays it’s a problem, because having sex means I usually end up hurting myself.
The problem isn’t only the physical activity involved. Experiencing arousal of any kind, but especially sexual arousal, means physical reactions like an elevated heartbeat. It means feeling how my body hits the gas and accelerates, something that is more than enough to put me in PEM afterwards. This can happen even if I don’t engage in any kind of sexual activity at all, just the arousal part is enough. This means that I’ve started feeling guilty about not only what I do, but for having any kind of sexual desire. Because desire can lead to arousal involuntarily and that makes my symptoms worse.
Desire with guilt
I sometimes wish that I could stop feeling any kind of sexual desire, because it would make my life easier. Most of the time just the thought of sex is almost impossible to even think, and it is easier then. But then I have days when I’m reminded of that sexual desire is a part of me and it makes me question myself. Am I really as ill as I think I am, as the doctor says I am, when I struggle with my wish for having sex? I know this questioning of myself is just ableism speaking, unfortunately it’s loud enough to make me listen.
I have this idea that people in my condition shouldn’t want to have sex, like I shouldn’t be able to experience sexual desire at all. This in itself is the ableistic stereotype of people with illnesses and disabilities, that we can’t be sexual creatures. It also comes from the idea that severe illness is supposed to be acute, and either you get cured or you’re just counting down do death. During the period of illness, everything is on hold except from surviving. With chronic illness, this doesn’t apply. Life goes on, because living on hold isn’t possible for me anymore. Even though chronic illness is very common where I live, this cultural myth exists and it renders people with chronic illnesses, symptoms and disabilities invisible.
So. I’m not sure where I’m going with this. I’m trying to understand why I feel like I’m doing something wrong just by wanting to have sex, and I guess I just started to give myself some answers.
CN: Abusive relationship
The other day I was suddenly reminded of the existence of my former abuser. It’s seven years since our relationship ended with a big drama, but it’s still very hard for me to refer to her as an abuser. I know that’s what she was, it’s just really hard to accept it.
When I was reminded of her the other day, it hit me that her words was one of the reasons for why I blamed myself so much when I got ill. She had told me that I wasn’t capable of certain things that I wanted to do, and she was very clear about how much she disagreed with certain choices I had made for myself. When I got ill in ME I thought I deserved it. I thought it was my fault, that I was the one to blame since I had done something wrong. I didn’t think that my choices were wrong but she had manipulated me into thinking that I was a bad person for making choices about my life that she didn’t agree with.
It’s truly difficult for me to grasp how deep the concequences of this relationship were. I still feel fear whenever I think about her.
The other day I wrote about how I was surprised to see my mom sad when I told her that I was a bad daughter. The particular situation happened when I was a teenager but today, around 15 years later, but it turns out that I’m still a bad daughter.
My mom is upset that I didn’t attend her birthday celebration. It was organized in a way that’s not accessible too me. What’s even more confusing to me is that I wasn’t invited to it. She mentioned it briefly a few days ago when we were discussing something else. Since she had already planned it in a way that makes it impossible for me to attend, I assumed she was fine with celebrating her birthday without me. Today it turned out that she’s disappointed that I didn’t come.
I called her in the morning to wish her a happy birthday, something that was difficult since I’m so low on spoons that phone calls is really demanding. Then she told me she was sad and disappointed.
Here’s the thing: She helps me out with practical stuff with my kid sometimes, and now I don’t know if the plans we have made are still happening or if she considers the plans cancelled automatically. She didn’t say anything about it but it has happened in the past.
I want to write about power dynamics but I can hardly move my hands so that won’t happen. I’m just stuck in my bed, crying every time my kid makes a noise outside the door and feeling like a really bad person for… I don’t even understand exactly what I did wrong.