As part of the ongoing diagnostic process in and around my recent lymph node biopsy that indicated sarcoidosis (mostly in a process of elimination showing the absence of anything else, such as cancer or infection), today I had to return for a CT scan of my torso to see if the issue extends beyond my lymphatic system.
The morning went as smooth as it could, given a need to roust myself earlier than usual, and given the physical and psychological resource deficit from Sunday night’s marathon of panic dreams and Monday afternoon’s trip across town to walk around Oregon Zoo. In the absence of anyone having given me instructions, I managed to remember that I needed to eat early enough to be able to not eat in the last two hours before the scan. Given my sluggish cognitive state, this itself was something of a minor miracle.
Getting to the appointment was fine (side note: my new London Fog raincoat is the best thing in awhile), checking in was fine, killing time before the appointment was fine.
Getting set up for the scan was fine, too, until the very moment they slid me into the scanner and, despite my eyes being tightly shut, I proceeded to have an immediate and intense attack of claustrophobic panic, and hollered that I needed to come out, I needed to come out.
I’ve had CT scans before. This was, I think, my fourth or fifth. It hadn’t occurred to me, and it hadn’t occurred to anyone to mention, that obviously this particular scan required me to be all the way into the machine.
The nurse and I spent the next five minutes trying to figure out how to calm me down enough to manage. I got them to specify how long the exam would take overall and how long I’d be inside the machine for each scan. Right about when I started to get a handle on getting my breathing under control and was gearing up to try again, an insistent voice calls out from the other room: “Roll him in! We’ve got two patients waiting.”
At which point, two things happened: (1) I yelled, “You can either give me a minute or I can have a panic attack inside the machine.” and (2) the nurse quickly and sharply waved him off.
In my years with my healthcare provider, I’ve only ever had a single, solitary bad experience of a nurse there. (In that case, it was literally about my being autistic: the nurse did not like that I wouldn’t take off my mirrorshades, there in the tiny, fluorescent examination room.) I’ve had countless of perfectly fine, if perfunctory (in the matter-of-fact, not the dismissive sense) experiences, and more than one experience where I absolutely and unequivocally never would have been able to cognitively or emotionally navigate the experience without the nursing staff.
I should note some things here. For every medical appointment I’ve had over the last several years, I’ve worn a t-shirt that simply says, “actually autistic”. It’s my usual routine to express this aloud whenever dealing with new people at appointments, but this is a good example of why I wear the shirt, too: my resource deficit is so low, I did not, in fact, ever explain aloud that I was autistic. The nurse, however, certainly saw it.
I’ve no idea whether the technician did, but, really, it shouldn’t matter. It was clear that I was in distress.
In the end, I got through it: one scan at a time—but I don’t think I’ve ever wanted to want to punch someone so much in my entire life as I wanted to want to punch the technician in the other room. Without advance preparation for new and potentially stressful experiences, I’ve got to do all the work in the room, in realtime. Trying to get me to hurry up, it might surprise this technician, doesn’t actually do anything to reduce that load.
The echoes of the technician’s impatient chastisement will reverberate in my nervous system for days. He won’t remember I even existed. It is days like this, precisely and exactly days like this, where everything else starts to seem off, or to go wrong. Days that seem like a completely unnecessary fight just to exert my right to be who and how I am.
It’s a fight no one should ever have to wage when accessing heath care. I’m there because there is something wrong with my body, which is stress enough, but I’m also there as an actually-autistic person trying to navigate that stress. Perhaps every health worker should be required to take regular training from nursing staff. I am not a widget on an assembly line, nor an item on a checklist to get through before lunch. I might be the patient, but they’re the ones who need to practice patience.