Warning: This one is long. But it needs to be said. Bear with me.
You scare me.
Be you doctors or nurses or therapists or pharmacists or even the person behind the counter in the office I’m sitting in so often.
You scare me. Terrify me, even.
I can’t do that here. Because I am also chronically ill. I am very sick and in pain, and I need your help.
But you still scare me.
I go into the doctor’s office and the first thing I usually see is bright fluorescent lights and bright bare walls and a bunch of chairs lined up against them. Sometimes there’s a TV on. Sometimes that TV will help distract me, but other times it will throw me off even further because it’s additional sensory input that I wasn’t equipped to handle at the time. I have to take from the spoons I was reserving for my appointment to handle the TV that’s now in the background, since I don’t allocate for it by default because it’s not always there. It’s not an element that I can rely on when I’m pulling myself together to go to this appointment.
Sometimes I go with someone, and this helps. But then I have to walk up to the counter and check in, sometimes fill out paperwork, sometimes have to go up again and ask questions or have something corrected, and when I go up to the counter, I do it alone. I walk toward this stranger, this person that I feel I am pestering with my questions that I should (somehow) know the answer to, and I speak up and I feel like I am exposing myself to danger just by doing so because I have no idea what that person will think, how they will respond, etc etc etc etc.
Then, past the gate keeper.
I go into this other room that typically has bright white walls with scary things like HOW DO YOU RECOGNIZE SKIN CANCER? and ARE YOU A SMOKER? THIS IS WHAT YOU’RE DOING TO YOURSELF (I used to smoke and still struggle with quitting). More fluorescent lights. Stainless steel sinks and needles in a box on the wall and various scary looking instruments on the counter (even though I know that they’re not going to be used). I have to sit on the cold examining bed with its crinkling paper and wait for the nurse to come in. All the while, I’m waiting alone, thoughts running through my head in a paranoid frenzy because I cannot control it, I have no way to control it, I have no rock with me to stabilize myself because in this situation, I am not allowed the rocks I have established for myself.
Nurse comes in and checks my vitals, which often hurts because when they check my blood pressure, they have to do it a bit more intensely than usual because it’s naturally faint, and sometimes they have to do this twice just to make sure they got it right. And then I see that facial expression, that confused look thinking “that can’t be right” and I have to explain to them that yes it is, it’s a family thing.
Nurse leaves. Wait again. Hear the ticking of the clock on the wall in a room otherwise silent, except for the crinkling of the paper I sit on should I shift.
Doctor comes in, and then the real scary part begins.
For those who are unfamiliar with the schizotypal spectrum (otherwise commonly known as the schizophrenic spectrum), it’s greatly impacted by anxiety and stress. Not only that, but we’re more susceptible to experiencing stress and we’re less capable of handling it. This combination makes for quite the clusterfuck. One of the things affected by it is the brain’s ability to coherently communicate, lest we be talking in word salad or metaphors that make perfect sense to us – but sound like complete gibberish to you.
So when the doctor comes in, I’m terrified. I trip over my words, I stutter, I repeat myself, I cut off sentences, I use words incorrectly or I wind up using the wrong words to describe what I’m trying to describe because all the while I’m trying to rack my brain for how to properly articulate what I mean.
And while I’m doing this, I’m also reading your body language to see how you’re responding to what I’m saying, since this in turn tells me if I am properly communicating what I am trying to communicate. People don’t know by default to tell me whether or not they understand, so I read what is readily available to me, and that too often terrifies me.
Sometimes the doctors that come in are awesome. They’re patient, they take the time to listen and don’t interrupt. They pay attention to what you have to say and take these things into consideration when they think of a possible diagnosis, a path to take for testing, or for prescriptions. They’re friendly and willing to help.
More frequently than not though, this isn’t the case.
The doctor that comes in puts you on the defensive. They interrupt you when you’re trying to answer their questions, which are often leading. They have preconceived notions based on your paperwork or records or their prior experiences with patients and the medical community, and this in turn leads everything that they do and how you wind up responding to it. They’re impatient and easily frustrated if you don’t answer the way they want you to answer, or in a way that they understand. They push medication that may not even work for you, because that is what they normally prescribe and can’t imagine why it wouldn’t work in this situation too, even if you’re trying to tell them why. And all the while their body language shows that they are getting frustrated as you become that patient in their eyes: the Problematic Patient. The one that won’t listen. The one that won’t get better. The one that fights those that know better, because they have the training.
It terrifies me. And every single time I go to a new doctor, which is often because I’m not usually in one place for very long and I don’t usually have access to stable insurance, I have to deal with the possibility of this happening again. And when I encounter one of the scary doctors, I become terrified at the sheer thought of going back, even though I know I should. I know I need to, because otherwise I’ll continue to hurt.
This carries on to every other part of the medical community I interact with. When I go to the pharmacy to have a prescription filled, especially if it’s a prescription that I know won’t work, I’m feeling the anxiety of remembering the doctor’s visit associated with that prescription, the anxiety of dealing with the situation for who knows how long into the future, and the anxiety of interacting with this stranger behind the counter in order to try to conduct business that requires coherent communication in order for it to go smoothly. And if I’m trying to get refills sometimes I wind up pulling out the wrong bottle and I get that stare, since that bottle is for an expired controlled substance that I no longer have access to (I use that bottle to carry my various medications in my bag). And that throws me off and makes my heart skip while I’m trying to find the bottle I’m really looking for, to show these people that yeah I am here for a real prescription, medication I need, I’m not a drug seeker really I’m not.
Sometimes these things don’t happen. Sometimes y’all, members of the medical community, are awesome. Like this physical therapist that I saw the other day, who had a cheerful and warm personality and made me feel so much better and relaxed after having dealt with one of those doctors. And nurses that’ll joke around with me as they take my vitals or blood, and give me juice. And doctors that will smile and listen to you, the patient, the one that knows your body.
But this isn’t very often. In fact, it’s very rare indeed. And because of it, I’m on a constant state of defense mode, simply because of my particular illnesses. And I’m sorry for that, I really am. Just… please, try to understand why. And that I am trying, even if you can’t see it very well.
So many of us are trying.