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| A doctor listens to a child's heart using a stethoscope. Image source. |
Part 1: Strangers
Part 2: Touch
Part 3: Doctors
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As a little kid, I believed doctors were authority figures who knew everything. But I now realize that, even though they're experts on the human body, that doesn't mean they know my body. Sometimes they way they typically do some medical procedure won't work for me, and I should communicate with them about that. Instead of just "trusting" that they automatically understand what my needs are, just because they're a doctor.
Actually, now that I think about it, medical procedures occupy a very very strange place in our lives. They are physically "intimate" in a way that's different from everything else in one's daily life. What I mean is, a medical procedure like getting blood drawn with a needle is a completely different experience from anything that happens in one's normal life; we don't really have any kind of benchmark to compare it to. And we don't observe other people as they experience these medical procedures, so we don't know what kind of reaction would be considered "normal."
And on top of that, when I was a little kid I assumed that everything a doctor or nurse did to me, that caused pain, was medically necessary. That they knew it was painful, but there was no way around it. Yes, it's true that that's often the case- getting vaccines or taking medicine is painful and/or unpleasant, but it's necessary. But it's only recently, as an adult, that I've realized not everything they did, that was painful to me, was actually necessary. In some cases, they didn't realize it was painful to me. If I had told them, they would have been able to figure out a less-painful way to do it.
For example, when I was around 20 or so, I was going to a lot of doctor's appointments because of a medical problem I had, and every single time when you get there, the first thing that happens is the nurse takes your temperature and blood pressure. They used that blood pressure machine, and oh I hated it. Every single time. The blood pressure machine squeezes my arm way too tight and it hurts. And I had to go to so many doctor's appointments, so I had to endure this blood pressure machine every single time. It was awful.
Until one time, somehow, I don't know if it was me or the nurse who suggested it, but it turns out it's not necessary to use the electrically-powered blood pressure machine. Nurses can take a patient's blood pressure using that one they just pump with their hand, while listening to the patient's pulse with a stethoscope. This is 100 times better for me. It squeezes, but not so bad that it's painful, like the machine.
So after that, every time I came to the doctor, I would ask the nurse if they can use the hand pump one to get my blood pressure, instead of the machine. See, just ask politely. Usually they can, and it's no problem at all.
But it was a totally new revelation for me. I had always believed that the things that happen at the doctor, that cause me pain, are medically necessary. That's why the doctors and nurses do them, even though they're painful. So, actually that's not true. Maybe they don't know how painful it is for me, and so I need to tell them, and it turns out it's not actually necessary to do it that way.
Or another time, when a nurse was trying to put a needle in for an IV before I had surgery. She was having a lot of trouble finding my vein, I guess because my veins are too small. Eventually she checked with the doctor about what exactly I needed the IV for, and it turned out I didn't actually need one with the standard needle size they usually use; I could have a smaller needle. So she put a smaller needle in instead, and everything was fine.
See, I guess they have a standard way they always do things, because for the majority of patients, doing it that way carries the least risk. Or is most convenient for the doctor. But sometimes there might be some reason why the standard way doesn't work for me as an individual, and they can find a workaround and do it a different way. They're experts in people's bodies, and they're good at their job, but that doesn't mean they know my body and what I need.
Another story, about a dentist appointment this time. I was maybe 11 years old, and the dental hygienist was trying to do an x-ray or a fluoride treatment or something. Something that required shoving a bunch of stuff into my mouth. And she tried a bunch of times, tried over and over to put it in my mouth, but it wasn't working, and oh it was awful. Then she changed to a smaller size of whatever it was- she said she was trying the children's size... and that was horrible too. Trying and trying to get it shoved into my mouth and then I had to sit there for a minute with that in my mouth, eww blah.
I don't remember whether she ended up successfully getting the procedure done, in the end. But on the way home, my mom asked me, "Why were you not cooperating? The hygienist said you weren't cooperating with the [x-ray or fluoride treatment or whatever it was]." And I was SHOCKED. I was totally SHOCKED. I had ABSOLUTELY NO IDEA that, throughout this whole ordeal of trying over and over to stick these massive uncomfortable things into my mouth, the hygienist believed I was being difficult about it on purpose. WHAT? My reaction was the normal reaction that any person would have when they're trying to let somebody stuff a huge uncomfortable thing into their mouth. I was trying my best to let her do the procedure, but man, just the nature of the thing, it just wasn't possible for me to do it any better than I did.
This is what I mean about how medical procedures are different than anything from my day-to-day life, and there's no way to know what the average's person's reaction is. I just react the way I naturally do... the way that, I thought, ANYONE would react to such an extreme demand being put on their sensory system... but apparently I was wrong? Apparently my reaction wasn't normal?
For my next anecdote... I want to mention gynecologists. I've seen many different gynecologists, and most of those appointments were bad experiences. Recently I happened to be reading an article on Planned Parenthood's website, about pelvic exams at the gynecologist, and it said it's not supposed to be painful. And I cried.
I didn't know it wasn't supposed to be painful. And, I think, that's a certain kind of trauma, when you endure pain because you believe it's normal and necessary, and then a long time later you find out it wasn't. And you didn't deserve to be treated that way.
And... I guess that's all I'm willing to say right now about gynecologists.
My point is, for me as an autistic person (undiagnosed until my 20's), going to the doctor has been more difficult and painful than it is for other people. I guess? Like I said, I have no way of knowing what a "normal" reaction is to a given medical procedure. It's harder because of my sensory issues- things can be painful for me in a way they're not painful for other people. And because of how adults (not in the context of doctor visits, but everywhere else in my life) didn't take my sensory pain seriously- treating me like I was just complaining for no reason, and I should stop... so then I didn't know I should communicate with medical professionals if something is painful. And because of my naive trust of authority figures- assuming that doctors and nurses magically knew everything about my body and what I was feeling, assuming that they knew it was painful for me and only continued causing me pain because it was really medically necessary.
Kind of an intersection of a lot of things that resulted in me enduring more pain than was necessary.
So now I'm trying to change that. Communicate more and stand up for myself. Ask for more information about medical procedures, whether or not they're expected to be painful, whether or not they're truly necessary.
Recently I was at the dentist, getting a cavity filled, and I decided to try this. Just practice a little bit about communication in the context of a medical appointment. I asked the dentist some questions about how the dental filling process would happen, how long it would take, can I look at it with the mirror when we're done, etc. I don't know why I was so nervous! I was just asking polite questions which were very easy for the dentist to answer, so of course it was no problem at all. But I was standing up for myself in a way I never had before. Instead of just quietly submitting to whatever extremely physically invasive thing a medical professional wanted to do to me, I was being proactive. Believing that I'm a part of this, and my feelings and choices matter.
And another positive example: Recently I went to a psychologist because of some emotional trauma related to, uh, you know, a lifetime of people not caring about my sensory pain. When she asked me for the reason I came to see her, I gave her an explanation along the lines of "I'm autistic, and so this and that sensory thing is painful to me, and X happened recently and I had Y feelings about it, which was surprising to me because even though I know X is traumatic for me because of A, B, and C which have happened many times throughout my life, I didn't expect I would still feel Y about it, and it makes me feel like D is true but actually I also know it's not, and I only *feel* like it's true because of E, so I don't understand why I had such a strong emotional reaction when it happened recently." Like, the way I explained my situation to her was based on conclusions I've drawn from years of analyzing myself and my thoughts and emotions. I've spent years learning what it means to understand myself as autistic, looking at trends and drawing conclusions, applying labels like "sensory pain" and "trauma", and those high-level conclusions were what I told this psychologist (along with a brief explanation of a recent event that had brought up some of the associated emotions and trauma). And also I sort of told her what I was hoping to get out of the therapy- that I was basically trying to understand the reason I felt a certain way, and how to make it less traumatic in the future.
I'd never done that before. I've been to lots of therapy, but I've never explained things to a therapist like that. I'd always just told them the basic facts of some situation that happened to me, and that's it. I thought, they're the expert, not me... they're going to magically understand everything about how I feel and what I should do- that's their job, right? And they would ask questions, and I would simply answer whatever they asked, rather than bringing up points that I thought might be relevant. I shouldn't do their job for them, right? If they want to ask me about some topic that I think is completely unrelated to my situation, well, I just trust that somehow it actually is useful and important for me. They're the expert, right?
I always felt like I wasn't allowed to draw these conclusions about my own life. No authority figure gave me permission to use words like "sensory pain" and "trauma" when I talk about my experiences. I figured that out myself... is that allowed? Maybe it's allowed when I'm writing about it on my blog, but like, not in front of a real doctor, right?
No, I guess I don't believe that anymore. Psychologists are educated and intelligent and good at their job, but that doesn't mean they know my life. I'm the expert on my life.
So anyway, I told this psychologist my high-level summary of my emotional history, not just the raw data about a recent thing that happened to me. I feel like it went really well. Unfortunately I haven't been back to see her again yet, because some other stuff came up in my life that ended up being a higher priority. But I am hoping I will have time soon to go back and see her again. See if my new strategy of treating therapy as a tool that's useful for me, that I'm in control of, is helpful. Instead of just helplessly flopping into the doctor's office and letting them ask me whatever questions they want to ask.
To summarize, I want to consider this question: What do I wish I had been taught about doctors, as a child? I guess I wish I had been taught to ask questions so I understand what's happening and how it's supposed to feel for me, rather than just quietly submitting to painful, physically intimate procedures I didn't understand. At the same time, though, I wonder if it's even realistic to think I could have done that, as a child- I was so shy and so scared of talking to anyone. But... it's necessary... as an adult I'm only now seeing how necessary it is for me. When someone touches you in a way that's so extremely physically intimate, there needs to be communication so both parties understand what's happening.
And... I want to use the word "consent", but I'm not even sure how it would work here. A child literally doesn't have the option of saying no to something their parents and doctor believe is medically necessary. There's a huge power difference- no, consent isn't possible. And even as an adult, even though I have the option to refuse medical treatment, that would mean I have to suffer the medical problem instead, so it's still not a free choice. Is it "consent" to choose the lesser of two evils?
But my point is, society focuses on warning kids about how to protect themselves from sexual predators. For autistic kids, that's not enough, because we are often hurt by good people who are not trying to hurt us at all, and that requires a completely different response than something like sexual abuse requires.
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