Valerie Rice | May 16, 2021
Once upon a time the other day I realized that having chronic illness and being Neurodivergent at the same time can be a bit befuddling for the outside observer. Do you wanna hear a story? Because you are about to! Okay, so, this one time, a few days ago…..
WHEN THE KID CALLS 911
To be fair, he had good reason. Unfortunately for me, I was then tasked with explaining to a crowd of strangers (nay, MALE strangers) what the hell was going on with me. As you might imagine, this is not easy at the best of times. Did I have a well scripted, easy to understand checklist prepared, as I would for a normal conversation? No. I did not have the time to prepare a statement for every potential question so that I would sound like a normal person. Oops. One paramedic asked me how long “this” ( wtf do you mean, bro?) had been going on. Here is a rough outline of the conversation:
P: About how long?
P: How long has this been happening?
M: Time isn’t real. The only universally applicable concept of time is “now,” it is happening now, and then, and later as well.
M: I’m not crazy, this is physics
M: What about today?
You get the idea. It happened again in the ER and the doctor suggested I talk to their psychiatrist (I did not).
IN THE EMERGENCY ROOM
This is a place where it gets even more complicated. Not only am I so sick that I need immediate attention but I can’t think straight and am alone. For those of us with sensory processing issues, this is pure hell. There are people, sounds, smells, conversations, and sensations EVERYWHERE outside as well as inside and we need it to stop. This includes the being bombarded with questions, repetitive questions at that, and it makes pain sensations worse. Describing those sensations is even worse. This is partly because the language is insufficient for the sensation (YEAH, I CHECKED) and the people around us are unable to sit still long enough to listen. They write down the first thing we say and take off, like the rest of the words I am using don’t count or something. Again, this is super frustrating. I know they are busy. I do. But my communication is limited when speaking in a personal crisis, so hang with me for a sec, okay?
WHEN YOU GIVE UP
Okay, I didn’t die, and I probably won’t. This is where the communication failure comes into play. For some reason, they latch onto a symptom and try to deal with it. Not why I am here, but cool, thanks? In this case, the migraine. The one I have had for 2 days because my injections are due this week. So the doctor does his standard treatment that never works while I cry about the chest pain and hope someone notices the serious fuckery with my heartbeat that matches the waves of pain and breathing difficulty I am trying to describe. Spoilers: They usually don’t. When the doctor comes back and asks about my head, I of course answer because….he asked? And sometimes I lie and tell him it was very helpful, thank you very much. It wasn’t, but it seemed super important to him for some reason. I may (or may not) get my cardiac issues addressed before going home, sick and sobbing, with treatment for side issues that have been brewing as well as zero confidence and a sense of guilt for inconveniencing the medical profession with my existence.
Okay, I am OBVIOUSLY not going to tell you all the gory details guys, but here is the main take-away from this: bring a friend. IDGAF that Covid is still raging. Well, I do. But for this, people like me NEED an advocate/interpreter/emotional support/karen/beep stopper. So find one, because it is only in retrospect that I can organize and discuss my thoughts. Also, if you want to see weird little video of me in the ER, find me on TikTok Until next time: Be Well!