Today I had a meeting with an occupational therapist and a kind of social counsellor at the ME-clinic. They are supposed to help me apply for different kinds of help, like help with household work and shampooing my hair. The clinic they work at had arranged for medical transportation where I could lie down and the meeting was held in a room with a fairly comfortable, real bed for me. Still, this was too much for me. The meeting was inaccessible and the consequence is a boiling brain and an upcoming crash (PEM).
Why? Because participating in a verbal conversation with three people (OT, counsellor and my partner) is in itself an inaccessible form of communication for me. My brain gets completely speeded from trying to focus enough and be able to actually articulate what I need them to know. Shifting from me talking to listening to somebody’s response is really demanding. Too demanding, it turns out. I had written notes helping me to remember what I needed to say, and I managed to say most of it, but it was too hard. I don’t really remember what the other people said, just fragments that are unsorted. I have no clear picture of what will happen now, it’s all just a big, messy lump in my thoughts, demanding attention to be processed. That means that my brain is still speeding, more than an hour after the meeting was finished. Meaning, I can’t rest. And before someone gives me the advice of taking notes and recording the discussion, my partner did that for me. However, that doesn’t really help to give me a clear picture now. The mess in my head will continue to demand attention and make it difficult to rest and recover.
This could have been avoided if we could have this chat online instead. Preferably via email so I could take time to process their answers and phrase what I want to communicate. If I could write, my voice could be heard without me collapsing, and I would be more autonomous. But where I live, communication with medical staff is supposed to be done verbally. Preferably in physical meetings, otherwise on the phone. Patients have to talk to get help, and those who can’t talk can possibly have somebody talking for them in some way, but the verbal talking and physical meetings are required, no matter how inaccessible it is. This means silencing some patients, actually quite a lot of patients. Demanding verbal communication has to be recognized as ableism and discrimination, and it has to stop.