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.

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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.

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.)