What I Want Somebody to Tell Me

I see that you are hurting

I see your pain, without demanding detailed explanations of what, why and how

I want to help you carry your pain

I recognize that your situation is complicated and that there are no easy solutions

You haven’t done anything to deserve being treated with disrespect

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We Will Always Have Our Script

“This is a hard situation”, I said to my kid.
“Yes, this is a hard situation”, kid replied.

This is a dialogue that took place a couple of days ago, when my child was upset. The lines probably don’t look like anything special, but the exact lines we used (which weren’t in English) were actually a quote from a children’s book that we read a lot for several years, and this quote has a special meaning to us. It’s hard for me to see my kid upset, just like it’s probably hard for my kid to be upset, and a couple of years ago I found it difficult to know what to say and do in these situations. At one point, when I realized that my efforts to comfort him were just making him feel worse, this phrase came to mind. Over the years, this phrase has developed to a mutual script that means that I recognize that my child is having a hard time but I will remain calm and not try to fix it or comfort him until he comes to me and tell me he’s ready to be comforted or for me to do something to practically help him.

People who hear us use this phrase seem to think that it’s a cute thing I do to help my kid. What they don’t realize is that having a mutual script is just as much about helping me, because I find it easier to remain calm when I know what to say. I don’t get caught in his feelings and it’s a great way to not get overwhelmed myself. When I stay calm, I’m a much better help to my child.

To me, this is what autistic parenting of an autistic child is about. Instead of me feeling guilty for not being able to immediately comfort my kid (who might not even want comfort right away), I do what I need to do to help myself be a good, autistic parent. I don’t try to become a non-autistic parent, just as the help I’m providing for my child isn’t aiming at making him less autistic. I do my best to provide the love, support and help for us to have meaningful lives, where we feel as good as possible as the autistic people we are.

Switching Roles of Pain

My partner hurt his foot the other day. It’s probably not serious but at the moment he is in pain and has to use crutches to walk. To my own surprise this is evoking quite a lot of emotions, and several times a day I find myself thinking about practical solutions in an attempt to get rid of these feelings. When I tell myself “stop it – deal with your feelings” I reach a point where I start reflecting on my experience of vulnerability. It’s hard, but also a big relief.

Seeing my partner in pain gives me an urge to do anything that can eliminate his pain, because I don’t want him to suffer. Unfortunately I can’t do very much about it and I know that in this situation the best thing I can do is to accept that, and not let my incapacity cause me frustration that then becomes an extra burden to my partner. This experience is a switch in roles, because usually he’s the one who has to deal with the experience of not being able to make my pain go away, as I’m the one living with chronic pain. The situation is difficult, but it does give us both a better understanding of the other’s challenges. Because no matter how much we talk about this stuff, we are two different people with two quite different ways of perceiving the world and there are nuances, feeling, thoughts and sensations that aren’t being captured in our words. Not yet, at least.

This situation highlights power dynamics that usually are more obscure. The position I’m in right now when my partner’s new limitations make him more depending on me puts me in a position of power. It exists simultaneously with me having to deal with my incapacity to make his pain go away and with my dependency on his help in my everyday life. I have to deal with being in a position of power and feeling frustrated because of my sense of powerlessness at the same time. I do this everyday (that’s what being a parent is about) but it’s new in relation to my partner.

Reflecting on the changed power dynamics has brought me to face the experience of vulnerability, and that was what this post was originally planned to discuss. As it turns out I had a need to sort out some line of thoughts first, but I’m planning on writing about my thoughts about vulnerability in my next post.

 

Sexual Desire and Not Tolerating Arousal

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.

Ableism From the Outside to the Core

In my last post I wrote about ableism in romantic relationships, with an example of power dynamics within the relationship. With only one example it was by no means an exhaustive account for how ableism can operate within romantic relationships, and at some point I want to elaborate more on this topic. Before I do that, I need to sort out some thoughts on how ableism can affect a romantic relationship on a different level.

I have spent a couple of years trying to wrap my head around a specific experience of how an ableistic society made a relationship impossible. As some readers of this blog probably have noticed, I was once in the beginning of a relationship with someone that I refer to as Liz. It’s probably annoying to some people that I’m a bit cryptic when I write about her, but I have to in order to protect both myself and her. Anyway, the story about Liz took place a couple of years ago but it’s not until recently that I could begin describing to myself what actually happened.

I was deeply in love with her. She told me she loved me and wanted to be with me. I froze and couldn’t tell her how I felt. She thought I was indifferent. The truth was that I couldn’t give her what she wanted in terms of a relationship, because of my (and my child’s) disablities. Because of an inaccessible, oppressive society that puts up obstacles and deny chronically ill and disabled people adequate help and healthcare. So I let her go, I didn’t even fight for her. Instead, I felt ashamed to the point where I thought I was a disgrace to… well, I don’t know to what. To love maybe, because how could I claim that I loved her when I didn’t even give a relationship with her a fair chance?

And yes, I’m still being secretive about the details necessary to make sense of what happened, simply because I still can’t grasp the reality of ableism. I’m hovering over a specific thing here, a part of reality that I can’t make myself write in plain text. Not yet.

The point is that romantic relationships are affected by ableism in more ways than just as a form of power dynamics within the relationship. The fact that a specific manifestation of ableism comes from outside the relationship doesn’t mean that it stays there. My experience is that it can permeate what I feel, how I act and what I communicate to the point where it’s playing the leading part, without me detecting it.