This is a draft I wrote to potentially have a doctor understand me. I have no idea if it’ll work and it could very well backfire on me. I already had a meltdown after calling the receptionist to schedule the appointment (as a new patient to a doctor) because they wouldn’t answer a simple question I had, and they already had seemed to be in a bad mood to begin with. I didn’t want to book the appointment if I couldn’t get an answer and was confused as why I wasn’t getting an answer and said so. I realize now it seems like their real answer was “I don’t know” but they didn’t want to say that (or maybe couldn’t? I’m honestly not sure). But they were very mean and I felt like I wasn’t supposed to ask a question when I had every right to ask. They eventually almost yelled at me as to whether I wanted the appointment or not, so I angrily said I guess so, and then they hung up on me. It was probably only a 5 minute conversation but I literally felt like I had just been bullied. I think they thought I was annoyed because they asked me to speak louder twice, and the third time I kind of shouted because I have terrible volume control. It was just answering a very simple question at the beginning of the scheduling part (they needed an ID number). And it seemed to have gone downhill from there. I was physically shaking after the call and took about an hour and a half to stop crying and hyperventilating. I don’t think any appointment call has ever gone that terribly before (though most go pretty terribly, to be honest).
So I’m considering writing down everything I want to say before the appointment. I do feel like I need to educate doctors because otherwise all I will be doing is never going to the doctor, or going to the doctor and telling them that everything is fine, and I don’t know why I am even here (I am pretty sure this is the only time I lie a lot because I feel like telling them my problems is an “inconvenience” to the doctor, since you know, they only have 5 minutes to talk to me and are so busy! Even though it’s literally their job to find out what the problems are..).
I’m a neuroscience grad student, and I’m also autistic, so hopefully the preconceived notions of both of those things will even out the perception of me. (fyi, I’m not stupid). However, I’m not good at summarizing how my body feels in 5 seconds, or answering the common question “why did you come to see me today? Do you have any other questions?”
I have alexithymia – something many autistic people have. It doesn’t mean I can’t understand what I feel, but I am not good at verbalizing my feelings to others in the approximate 5 minutes we have for this entire office visit. This is why I have barely ever told doctors my problems. I’m taking a chance by (for the first time since I was diagnosed, 2 years ago) disclosing this to you in hopes that you trust my judgement, and read what I say seriously.
Just because I can’t verbally summarize all of this information into an easy sound byte or look you directly in the eyes for 2 entire minutes (I do hear everything you’re saying btw, and the humming of whatever machines you’ll have in here), doesn’t mean I don’t know what I’m talking about.
Feel free to ask questions about sections, but please read the entire section even if I answer your open-ended question with “oh yea it’s fine, really.”
The bolded parts are the important parts if you spent the entire visit reading the top of this page (thank you for reading this).
End of Note, (put medical things under this).
I have a feeling that I’m going to end up not giving this to them, or if I do they will ask me what it is without reading it first, of course. I don’t know if it’ll work, but I’m more hopeful than I used to be. I’m not sure if hope is a good thing in this case, to be honest. This is why I am a learned pessimist. So many things don’t seem to go “as planned,” especially with strangers. I think being a woman makes it seem worse, as again, how could I not know how my voice sounded to other people? I’m a woman! I’m supposed to know! Even if I totally don’t know or can’t control it, the consequences are people already being mad at me for the first thing that comes out of my mouth, no matter what it is. I’m very tired of talking to strangers and being judged for things I can’t control. But wearing an autistic sticker probably wouldn’t work any better. I can just imagine the assumed incompetence I would get. I haven’t tried it but I feel like it’s like playing the lottery. It is very unlikely there would be a positive outcome. There’s no right answer.