When Night Falls

Content: This post refers to intrusive, traumatic memories.

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Night falls, fear rises.

When I fade away into sleep, my nightmares emerge.

My demons are real, alive and kicking. 

I’m inviting you for tea, because at noon I try to forget.

But when night falls, and fear rises

everything that’s me remembers what you did.

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.

 

Autonomy, Vulnerability and Safety

Content: This post includes mentioning PTSD, vulnerability and harm done by paternalistic behavior and lack of respect.

 

My ME (Myalgic Encephalomyelitis) has become worse during the last year and I’m therefore applying for help with some everyday chores. The days when I’m not able to make myself a simple snack are becoming more and more frequent and my partner can’t take care of me as much as needed, because he has to take care of our kid and work.

Applying for more help has made me think a lot about what I need to make this help work and it’s clear to me that I need people to be very careful about respecting my boundaries. If somebody is going to help me, I need that person to make it their first priority to make sure they help me with what I communicate, in the way I need it to be done. This might sound so obvious that it’s redundant to state, but in my experience it isn’t.

During the last years so many people (healthcare professionals, my mom and people from my social insurance agency) have demonstrated that they don’t respect my boundaries at all, and I’m hurt by it. For some reason it seems to be a common misunderstanding that when you are helping a disabled person, you are automatically entitled to the person’s private information and to run the person’s life. It doesn’t matter if I tell people that their ‘help’ is actually just making life more difficult to me, just by claiming that they are trying to help me they seem to think that they are free to do whatever they feel like.

When I say that this paternalistic behavior has hurt me, I mean that it has done some serious harm. I’m scared of healthcare professionals. I have nightmares and I’m hypervigilant in most situations where I need help. A big part of my PTSD stems from situations where I’ve been a patient, a child or needed help in some other ways. Also, healthcare has made my ME more severe by harmful diagnostic procedures, tests, assessments and treatments and nobody is willing to take any responsibility for it. Healthcare professionals act like it’s my fault that I have such a weird disease that they refuse to learn anything about, and having EDS and being an undiagnosed autistic doesn’t exactly make me less weird to other people.

When I think about how I could make receiving help work (and not just worsen my ME and PTSD), I think about how I need to have autonomy. How I need to be in charge and by getting practical help I become a subject that cares for myself. I don’t want to be taken care of, I just need people to practically do what I can’t do. I need my knowledge about myself to be respected. I need to be seen as the expert. Given the background I just accounted for, these needs (that are a lot about restoring my integrity and sense of humanity) make a lot of sense to me.

Then, every evening as night falls and I’m waiting to fall asleep, something else surfaces. I stop thinking about practical solutions, and I’m too mentally exhausted to think one more analytical thought. Then I’m just longing and hurting. I’m too exhausted to defend myself against people who are not respecting me. I’m ashamed to write this but then I want to be protected. I long so hard for someone to comfort me, and it feels so totally impossible to ever allow it again. My deepest, most shameful desire isn’t sexual – it’s about feeling safe enough to allow myself to be vulnerable in somebody else’s presence.

Initially, these desires seemed contradictory. Daytime I fight to defend myself and avoid situations that make me vulnerable to other people’s harm. At night, all I wish for is to be able to be vulnerable again. However, these aren’t contradictory needs. It hit me last night that being deprived of things like integrity, respect and a fundamental sense of safety means I was also deprived of the privilege of trusting people. Longing for autonomy and longing for vulnerability isn’t two different things, it’s two different sides of the same need: safety.

What gaslighting does

My social insurance agency is trying to find a way to not pay me anymore. Yesterday when I ended the phone call that informed me about this, I started crying. I felt like my thoughts and feelings were being thrown around inside me, impossible to grasp. Within five minutes, I had relived a lot of the fear and shame that I’ve experienced during the last six years. I guess this is what post-traumatic stress does, it sends me back to a number of very frightening  situations without any notice.

Besides from worry about my financial situation, there is an equally horrible thing about this. I have to face all the times when doctors, physiotherapist, nurses, occupational therapists and psychologists made my symptoms worse with their assessments and treatments. Permanently worse. I have to face all those times when they were telling me that I interpreted myself and the world wrong. When they told me that what I was experiencing didn’t really happen. I have to face the fact that all that iatrogenic harm that I’m now living with the consequences of – it didn’t happen according to the people who should bear responsibility for it.

When I had calmed down a bit, I thought about this post about gaslighting. Because I think that one of the reasons for why being ill and disabled and going through a number of assessments and treatments has hurt me so much, is that I’ve been gaslighted all my life. As an undiagnosed autistic, people have constantly been telling me that I’m not experienceing what I’m experiencing. A quote from the post phrases this very eloquently:

Being an undiagnosed autistic can feel like the whole world is gaslighting you. From being told not to be silly, the lights aren’t hurting you, to being shouted at to pull yourself together, when you’re slipping into meltdown, you’re being told every day that your lived experience isn’t real.

This feels very important to understand in order to cope with what’s happening. It is very hard for me to deal with this kind of scrutiny that the insurance agency will put me under, because it makes old wounds start bleeding again. I still don’t know how I will get through this, but I know that reading about other autistic people’s experiences of gaslighting is helping me.

Abuser

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.