emoji with finger over mouth

When I Can’t Speak

I need to write. I need to type, tell, to be a witness. Not because of what I have to say is new, on the contrary I know so many other people who share my experiences. I need to tell this story, because until change happens, it needs to be told over and over.

I can speak with my mouth, sometimes. My verbal abilities however, are unreliable and it seems like my pattern of communication – the logic that decides when I can speak with my mouth and when I can’t – is something totally different from what this world can understand. I don’t understand it myself. I don’t know why I can talk through my mouth a lot more with my partner than with other people. I don’t understand why verbal conversations with healthcare professionals have become almost impossible.

I don’t understand. I doubt that a speech pathologist or therapist will ever be able to help me, because the ones I come in contact with seem to deal with very different people. What they write about the people they are claiming to help has very little to do with me. So no, no hopes there.

This world seems to hate people like me. You hate it when I ask for written communication. You hate it when I ask for some kind of written communication that doesn’t require us to respond immediatly. You want to solve that by speaking in a slowly manner, and then I have to ask you to speak faster because I can’t keep my focus when you slow down. I need information to come to me fast but then I need to be left alone to process before I can reply. This is apparently so weird and bad that it makes you treat me like a piece of shit.

I still don’t understand my speaking difficulties.

I wish I did.

I wish you did.

Hope and Vulnerability

Content: This post is about being harmed in healthcare.

 

Soon, it’s time.

When I wake up in the middle of the night from POTS making my heart speed, I start thinking about it. I think about how I will try to explain and make you understand how easily things can go wrong. I choose words, revise, choose again. What do I need to do to make you want to protect me? There is no answer to this question, and therefore I want to stop hoping. I’m trying to give up, trying ot not have any hope, trying to stop caring. But I can’t.

I hate that the last shred of hope won’t leave. I hate that not even when I panic, scream and cry and hide under the duvet, I still can’t get rid of the tiny piece of hope that makes me care. I don’t want to care. I don’t want to hope. I don’t want to spent my precious energy on trying.

Hope makes me vulnerable. It’s the leftovers of hope that makes it possible for you to crush me. It’s because of hope that you can emotionally kill me. You, as a doctor with the power to redefine truth, can destroy me. It happens so easily.

When other people with ME advocate for healthcare, I want to ask if they really know what they are doing. Yes, we need healthcare, but we also need to stop the harm. Is it possible to do both?

I don’t know anymore.

I don’t think it is.

As long as I’m not considered a human being worthy of safety and protection, healthcare will always harm me.

In a Bad Place (Trauma Journal)

Content: This post contains depressive thoughts, a description of anxiety, a mentioning of trauma and CPTSD and some suicidal ideation

 

People tend to think that I feel bad because of my ME. That the depressive signs come from being robbed of so many experiences and being in so much pain. They are wrong. Yes, having ME is painful and the symptoms are often horrible, but the truth is that I seem to be able to endure that to a certain extent. At least, it’s not what makes me lose all hope.

The truth is that I can’t fathom how I’m supposed to go on living because of the emotional pain. The pain of being robbed of myself, of not being allowed to exist, of being treated like a thing, of having my needs and my humanity downgraded.

I know by now that I’m autistic. It explains so much and if I would have lived in a world where autistic people’s needs could be met, my life would be different. But I don’t. I need very straight forward communication, but that’s not possible. I need predictability, but that’s not possible. I need to be able to communicate in ways where I’m allowed time to think and where I can write, but that’s not possible. I need to not being accused of all sorts of things all the time, but that’s not possible.

Socially, I’m quite useless. I care about people, a lot actually, but I can’t show it because I can’t predict the consequences. What if my care is too much? What if my care means that I’ve suddenly made a promise I can’t keep? What if my care crosses somebody’s boundaries?

Also, it’s hard to display the care and love I actually feel because it’s overpowered by the sense of feeling like I’m rotting from the inside.

Growing up, it often felt like a I had a rat in my chest that was eating my inside. The experience never went away, but during the last couple of years it’s often replaced by the feeling of rotting from the inside. Of decay, emotional death, like everything that is me is infested by a virus that makes piece by piece molder into nothingness. I’m almost just a shell and what’s left is just the anxiety, trauma and fear.

I love my kid, my partner and my friends so much, and I’m so scared of hurting or harming them. So often I catch myself thinking that it’s better for everybody if I’m not here to hurt them. I know that it’s the CPTSD speaking, and I’m trying to fight against it, but I don’t know what to believe anymore. I feel like I’m a liability and that my kid is put at risk, because people around us think that  my kid isn’t really autistic, but that I’m making them seem like it because of all my own issues.

I guess that most of all, I’m wondering why it’s okay for people to use me as a punching bag. I wish it didn’t get to me but it does.

I’m in a bad place right now, because of healthcare, because of the person who used to be my mom and abuser, because of how the ME community treats people.

An Object in Healthcare (The Lack of Consent)

Content: This post mentions traumatizig experiences of medical assessments and a lack of consent

 

I remember the nurse who reached for his equipment for checking my blood pressure and started to ty to wrap it around my arm. I pulled my arm away and said “stop! I need to explain something first”. The nurse looked surprised, and the whole situation got uncomfortable.

My body is weird. It behaves weirdly. Actually, most things about me is weird and it’s a problem in healthcare situations. What I remember more strongly from this situation though, is not the usual wierdness, but how the nurse actually stopped for a second. Most of the times, the nurses, doctors, physiotherapists and occupational therapists that I meet just do. They don’t tell me what they are about to do. They don’t ask for consent. They don’t even stop talking, instead they keep on talking while doing things ot my body and the situation is usually so overwhelming and confusing that I can’t protest.

This isn’t about a specific person not being great at dealing with patients. Considering the fact that most people in healthcare that I meet act like it’s totally fine to touch me and judge me without consent, this is probably about more than a few disrespectful people. For a couple of years I read magazines for doctors and nurses and realized that this is the method being taught in doctor’s education. “Do your things while talking, to save time and make sure the patient can’t focus too much on anything, because that will give you the most truthful results.” The fact that it makes protests difficult and the lack of a step for information and consent never came up.

My body is mine, not yours. It’s not an object for you to assess like a doll. So why do I feel like I’m emotionally dying whenever I need to interact with anybody that has anything to do with healthcare? Why do I experience the deep sense of being reduced to something that isn’t a person or a human being anymore, when I interact with anyone form healthcare? And how am I supposed to handle the feelings of intense shame every time I even get a letter from anything that has to do with healthcare?

These are all rhetorical questions. I don’t want your answers and I certainly don’t want any advice on how to handle this.

What I want is you, the people working in healthcare, to stop treating me like this. I want you to ask for consent in a way that gives me a real opportunity to say no.