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.