The Weight of Waiting

I hate waiting. I especially hate waiting for doctors because I’m usually nervous for the appointment for one reason or another, yet I imagine I spend nearly a week of every year in cumulative minutes waiting for doctors. With my bevy of health issues and the frequency of appointments, I wish I could rack up frequent-waiter minutes for free copays at the very least. Although I’ve never administered any sort of global survey, I’m confident that no one likes waiting for doctors. Every appointment has at least a three-tier wait: the weeks or months you have to wait to actually get the appointment on the books, the initial waiting room once the appointment day has arrived, and then the wait in the room after they’ve narrowed down the field to the top three.

Sensory processing disorder carries with it a multiplicative factor that exponentially increases the pain of waiting. The close proximity to other patients gives me a headache. Invariably, some woman is wearing perfume or is reading a magazine that contains a fragrance sample that wafts out with every page flip. The lights are always fluorescent, which bothers my eyes, and they have a constant buzz, which drives my brain crazy. It’s becoming more and more common for offices to have a TV in the waiting room for the “comfort” of the waiting patients. They’re always either too loud, or more often, playing some emotionally disturbing video: at my latest appointment, there was a violent movie; before that, I was at an office with a dramatic soap opera, which stressed me out. And then I have that weird empathy issue (empathy issue): If other patients in the waiting room are displaying physical pain or discomfort, I feel it too. The minutes drag on while my body mounts a mirroring pain response, reflective of what I see around me. The temperature is never right. It seems like it’s one of either two extremes. I have very poor thermoregulation, so I arrive equipped with various layers so I can try to self-regulate, but I’m always under-prepared, as the thermostats in these places must be set outside of what I consider to be the plausible range.

After all the waiting, I finally get to see the provider or someone on staff. This is where “bizarre-o nonverbal Amber” decides to assert herself (which is ironic because in doing so, she prevents “normal Amber” from being assertive!). No matter how much rehearsing or memorizing I do, outlining or even scriptwriting I bring to reference, or how much I’ve had to say about my issue prior to the appointment, it’s like I’m suddenly just a nodding, shrugging, and otherwise single-word utterance speaker. I think the stress of the appointment, the sensory overload of waiting, the pressure when it’s finally time to talk swallows me in a wave of stage fright, and the concern that my problems will suck up too much of the doctor’s time (I hate to be the reason others have to wait even longer) all combine in the least helpful way and transform my typically communicative and expressive self into a shadow. I recently told my autism therapist this after she asked how a particular appointment that we had discussed and “prepared” for. The need for the appointment had come up in our discussions the few days before the appointment. I admitted to her that I was particularly nervous for this appointment but I was not sure why. After some probing and exploring, I admitted that I was nervous that I would fail to be as proactive and assertive at the appointment as I intended to be and that I’d be overly passive and quiet and my needs would end up not getting met. After all, I venture to guess that most doctors aren’t mind readers and as mentioned, most are very busy. They aren’t going to stand there waiting in silence for the patient to form some semblance of additional information to impart on the discussion!

It turns out that it’s actually somewhat common for normally verbal (or even loquacious!) autistic people to have periods or situations where they are rendered non-verbal for one reason or another. I had no idea. I’ve discussed, and fully admit, that even on my best days, I’m not the most effective oral communicator, but I can usually get some number of words out, save for times I’m particularly scared or anxious or shy. Well, now after tracking the pattern, I see this does not hold true for appointments, which is a shame because you really have to be proactive in our physical and mental healthcare system on this country to get the help you need. My therapist said to either bring written notes that I directly give to the nurse, PA, or physician or go with a companion (interpreter).

This experience and revelation about what happens once I finally get my window of time with the doctor has me considering if there are other regular situations in which my ability to speak becomes significantly reduced. In fact, I’ve already identified several other routine occurrences where “nonverbal Amber” takes to the director’s chair. One of the primary functions of this blog is to help me identify and understand my various challenges so I can try to work on them. This seems like a more superficial one to chip away at when I need a little break from the elbow grease demanded by some of the more critical and challenging issues. And hey, I already said I go to appointments all the time; I’ve got an endless number of opportunities to practice!