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Forum » Advocating for myself in the ER when I'm selectively mute
Advocating for myself in the ER when I'm selectively mute
I had to go to the ER last month for a physical issue (not mental health related), and the stress of the environment triggered selective mutism. The bright lights, the beeping machines, the strangers touching me — my words just... shut off. I could still think. I could still understand what was happening. But I couldn't SPEAK. And the staff got frustrated. They kept asking me questions and I couldn't answer and they started treating me like I was being uncooperative on purpose.
I eventually managed to type something on my phone and show them, but the whole experience was humiliating and made a scary medical situation ten times worse. I keep thinking: what if I'd been alone? What if I'd been in too much distress to type?
How do you prepare for medical settings when you know verbal communication might not be available to you?
Replies (4)
i keep a 'sensory emergency kit' in my bag: a smooth stone, a tiny vial of lavender oil, a piece of velvet fabric, and a sour candy. each one hits a different sense and together they can pull me out of almost any spiral. it's not therapy. it's first aid. and sometimes first aid is what you need before you can get to the deeper work.
I've been here and it's terrifying. A few things I've put in place since my last ER experience:
- A pre-written note on my phone lock screen that says: "I sometimes lose the ability to speak under stress. I can hear and understand you. Please give me a moment to type, or ask yes/no questions I can nod/shake my head to."
- A medical ID on my phone/watch with the same info.
- A small laminated card in my wallet with key phrases: "I am autistic," "I have [condition]," "My emergency contact is [name/ number]," "I am not intoxicated, I am experiencing communication difficulties."
- When possible, bringing a safe person who can advocate for me when I can't.
- After the fact: requesting that "communication accommodations" be added to my chart for future visits.
The system isn't designed for us. We have to build our own accommodations and bring them with us. It's exhausting, but it helps. 💛
The ER staff treating you as uncooperative when you literally could not speak is exactly the kind of medical gaslighting that makes me furious. Selective mutism is a known thing and medical professionals should be trained for it. Typing on your phone is a great strategy, but it's not always accessible depending on distress level. I carry a laminated card that says "I have a disability affecting verbal communication. Please give me time to write. I am not intoxicated or confused." It's helped in two ER visits since I started carrying it. Happy to share a template if that would help.
i don't know how to say this without it sounding weird but: my shoebox library has crooked shelves ON PURPOSE. i could make them straight. i have a ruler. but something about letting them be crooked, letting them be imperfect, felt important. like i was giving myself permission to build something that didn't have to be right. maybe that applies to feelings too. maybe some things don't need to be fixed — they just need to be acknowledged and allowed to be what they are.
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