Lacking Information and Processing Problems

Content: This post mentions anxiety and discusses processing problems and chaos in relation to poor information about disability services.

 

 

I’ve been approved for some disability service. It means that somebody will come and do some cooking, cleaning and laundry for me. Earlier today I tweeted about how much anxiety I’ve had ever since I found out that I am approved for this help, and in this post I’ll try to explain one of the reasons – processing difficulties because of lack of information.

A red rectangle with black. and white images inside it picturing cooking for someone, cleaning and a washing machine.

This is disability service, or more correctly a symbol for disability service. I will get help with cooking, cleaning and laundry.

The rectangle is now grey, but the black and white pictures are still there. Around them questions marks have been scattered.

I know what kind of services I’ve been granted but, there is information I don’t have about this service. Some of the information I don’t have can be articulated into questions, like “are there time limits for each task?”. However, with most of the stuff I don’t know it’s different. All I know is that there are things missing to create a whole image in my mind, like pieces that connect the known pieces to each other. I know that I don’t understand how this service is supposed to work, but I don’t know what information I’m lacking and therefore I can’t articulate questions about it. The red color in the first picture is like the glue that creates a connectcion between the other pieces – but it isn’t there. The pieces of information I have are like fragments that are not properly attached to each other because of the missing information.

Same grey rectangle but now the pictures of a washing machine, cooking for somebody and cleaning have been tossed around so they are tilting and look like they are just scattered around together with question marks.

People seem to expect that I’m supposed to understand the information I have and ask about the things I don’t know, but to me it doesn’t work like that. Since there are pieces missing, I can’t process the whole picture and I don’t even understand the information I have. I can process the things I know as individual fragments, but that doesn’t give me a clear picture of what it’s going to be like to get this help. Instead, trying to think about this disability service is like trying to make sense of a chaos. Pieces of information are tumbling around. My brain works constantly trying to process and understand what it will be like to have this help but all it does is draining me of energy and causing anxiety.

Intimacy

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.

Interactions

Social interaction. Why is it so hard? Or more exactly, what is it that makes it so demanding to me?

My life is filled with people I care about, and I want to interact with all of them. So what’s stopping me? I don’t know. Maybe that I can’t focus on more than one person at a time. Maybe that I have to think very hard and tend to spend energy on thinking about how to behave to not be a burden or annoy the other person. Maybe it’s because dialogues sometimes make me hyper. Maybe it has something to do with that my brain is such a mess and to keep focusing I have to contract every mental muscle as hard as I can to remember what we’re talking about.

It has something to do with my inability to shift focus. I can focus on writing (or sometimes talking), or I can focus on reading (or sometimes listening). But the shift from one to the other, back and forth, feels like running a mental marathon. When I have to shift focus, I don’t parse what I’m reading and thinking automatically.

It’s ironic, the focus shifting comes back in everything.

I read what people write. I ponder. Then I write something but never as an obvious reply. I rarely reply in twitter threads. I read and then I make my own thread.

Sometimes it’s easier. When I get to talk about one of the things that I care passionately about. But then I feel guilty about me taking up too much space. It’s not that I don’t want to know what the other person is thinking, it’s just that I’m not good at articulating questions. I fear that I will ask something that is too private. I don’t want to be the person that violates somebody’s privacy, because respecting boundaries is always more important than a correct conversation.

Of course, it’s also the fear of rejection. I can’t get rid of the gaze that deems me as defected. Nowadays I call myself autistic and I have found other people that are very much like me, but it doesn’t erase thirty years of being wrong.

Let Me Decide If It’s Worth It

As a person with a bunch of chronic conditions I’m sometimes told by so-called experts that I should do fun and meaningful things, even if it leads to a worsening a symptoms. This is especially common among healthcare professionals who work with people with chronic pain. People who advocate this approach to dealing with chronic pain seem to think that the positive outcome of doing something meaningful will be greater than the pain, and that will make it worth it. Avoiding things that trigger more pain is called avoidance or fear and is for some reason always considered irrational.

I wonder how much damage this idea has done to me. Even though I have never really believed it, it has affected me. It has made me think that there is some piece of truth in it. It has made me harm myself.

Yesterday I met with a friend and her kid. It’s the first time in a year that we have met. Actually, it’s the first time in a year that I’ve met with any friend away from keyboard. The circumstances were made to be as gentle to me as possible: I took breaks and rested, my partner did all cooking and practical stuff, we were outside in the garden to keep the noise level with two kids down. We had a great time. Still, I feel so bad today. My tachycardia is worse, fever is up, pain is increased. My sensitivity to light, noise, movement and moving visual impressions is horrible. I can’t brush my teeth because my muscles are too weak and sore to hold my electrical toothbrush. I can’t be in the same room as my kid. I can’t be outside. I’m isolated in a bedroom with curtains down, needing help with almost everything but can’t tolerate to have people around me.

I had a great time yesterday, but was it worth it?

No. It wasn’t worth it. It wasn’t worth this.

I knew I was going to pay for seeing my friend and her kid, but I thought it was going to be worth it. I don’t know exactly how I was thinking, because I knew I was going to pay by feeling like I am today. There’s no surprise going on here. So why did I think it was going to be worth it?

Because a part of me still can’t let go of the ideas planted in my head by healthcare professionals who have no clue about how bad many symptoms get when I exert myself. I know they are wrong but I want to believe it. I want to believe it because I don’t want to have reached the point where I only see my kid, partner and healthcare professionals AFK. But it seems like I have.

How does it come that so many healthcare professionals seem to think that their job is to make people accept our situations by over-estimating our capacity and pushing ourselves, instead of learning to truely accept the limitations we actually live with? How does it come that these people, who brain-washed me into thinking that harming myself is a good thing, never have to take any responsability?

I know the answers to these questions. I just have a hard time believing that it’s true.

 

(Update: With ME the thing where healthcare professionals push us to over exert ourselves is especially bad because we don’t always recover, we risk permanent harm. I’m well aware of this but just realized that I don’t make it clear in the post.)