I just want to be allowed to be scared and sad without being brilliant

As I become more and more severely ill with ME, it’s getting more difficult to write. I can’t write that much anymore because it worsens my symptoms too much. Unfortunately, it means that I’m detaching myself from the world more and more, because my only connection with the world is my writing.

I’m thinking about this today, because I want to interact with my friends. I want to but I can’t grasp my thoughts, meaning I can’t say (write) anything analytical or smart. I want to tell people that I care about them, that I miss them, that I value them, but I’m so sad, so ill, so scared and so tired that I don’t know what to do with myself. So much of my social life is built on me saying smart things, and I have nothing insightful to say about anything today. It hit me so hard last night, that I’ve ended up in a situation where I think that I don’t have a right to talk about how hard my life is, and how sad and scared I am, if I don’t do it in an intellectual kind of political or philosophical frame. I’m trying to break free from this idea (that’s why I have this blog, I guess), but honestly, every attempt is making me so ashamed.

It’s not exactly helping that certain people are obviously terrified when I try to allow myself to be vulnerable. Not the people that I consider my friends, but some other people. Even though these are a minority, it affects me really hard. I caught myself daydreaming about being allowed to be sad and scared. It’s… I don’t know what. I’m sad and scared all the time, I’ve been terrified all of my life, and I still haven’t learned to allow myself to be sad and scared without feeling intense shame about it.

I want to write reflecting things about this. I want to write about how ever since I became ill, since it became more obvious to people that I’m disabled, it’s like people are blaming me like hell every time I’m open about how political decisions are making y life hell and how bad I feel because of that. But I don’t have the energy to follow my own thoughts. My head is a mess.

And I can’t even cry.

 

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I Just Want to Be Safe

Content: This post includes thoughts on safety, fear, threats and abuse related to ableism

 

I hope I’m just having a bad day. Like, I really, really hope that this will pass soon.

Because I’m falling.

In some aspects I’m safer now than I was before, and that’s great and totally terrifying. When I’m finally a little bit safer, the thought of going back is so scary that I almost wish the temporary safety away. Because I can’t go back.

But I will be unsafe again soon. One of the bigger threats is on its way back. There’s nothing I can do about it. In a month, it’s starting again.

I can’t. I can’t do this.

My mind is preoccupied with the idea of ever feeling safe. People think that my highest wish is to not be ill anymore but it isn’t. Because even if there’s a cure for ME one day, I could still be ill again. I will still be disabled. In an ableist world, that means being very unsafe.

I just want to feel safe. I just want to live a life without the constant threat of abuse.

The Emotional Harm of Unhelpful Help

Content: This post contains explicit descriptions of situations of harm done by people who are supposed to help. It refers to feelings of fear, vulnerability and unsafety.

 

I’ve been approved for a service where I will get help with some household stuff. Mostly it’s to get breakfast done for me, and a certain amount of tidying, cooking and cleaning, but also to get help with schampooing my hair. At first it was a nice surprise that I was approved for this, but now I’m feeling really bad about it. I can’t imagine how I will ever make this work without me being harmed in one way or the other.

Thinking about how a stranger (or strangers) will enter my home makes me feel like the world is imploding. It’s a specific sense of disaster that I really can’t describe more precise than that it creates an intense fear that feels like reliving all those times people who I’ve been depending on have harmed and hurt me. I relive all those times in one second, with all fear, pain and vulnerability enhanced to a level that I don’t have any mathematical expression for. Because it isn’t only the sum of all fear and pain, it transforms into something else. To an unwanted insight of how unsafe I am in this world. Letting people into my home to help me means giving people the power to harm me again. So far my experience says that this is what will happen. Because when people don’t understand what I need, they harm me in at least two different ways.

The first kind of harm is the practical harm. If I need help with getting something to eat and you give me something that I’m allergic to, you harm me. This is usually fairly easy for people to grasp, but it happens a lot anyway. However, when I need help from a doctor with a medical problem, and the doctor fails to recognize and understand how I respond to meds due to having ME and therefore prescribes meds that lead to permanent harm, it’s usually not recognized. When I need help with special transportation (transportation that allows me to lie down) and the driver keeps talking and therefore creates unnecessary brainfog, it’s usually not admitted to be harm. When the person who is supposed to help me out by cleaning my home creates extra work with coordination and therefore steals precious energy and makes me exert myself more than what I should and I therefore end up with a worsening of symptoms, it’s usually not considered harm.

The other kind of harm is the emotional harm that the practical harm leads to. When I need help with food, cleaning and other household stuff but the person helping me is blaming me for having such unrelatable needs, such as only certain hours of the day, limited talking, only certain food, keep the curtains covering the window and what not, I feel unrelatable. Like my needs aren’t real needs, like I chose them. Like I could get rid of my needs if I only made an effort. It hurts because I’ve frequently been blamed for being such a demanding and difficult patient and person. When I’ve been practically harmed I’ve most of the times not received any apology, but instead been further blamed for the pain someone else has caused me. That makes me scared, because to me that’s like saying that harming me is justified by me being so difficult. It means it will happen again.

The harm that I’ve been subjected to so many times by people who were supposed to help me has made me a very suspicious and scared person. Letting a new person into my home to help me feels like inviting an abuser into my home to attack me.