Answering Questions About Pain

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It is extremely difficult. I share others' frustrations that the interpretation of the doctor matters more than what you actually say.

I am reputed for having a very high pain tolerance. To the point that my assertion that something was tolerable or not that bad is considered fully inadmissable and possibly worthless by several of my friends, when it comes to considering whether they could tolerate it. They think of it as a compliment and a way to show they know the ways in which I am cool and different, but it doesn't usually feel positive to be dismissed that way.

When I was a kid I read a book for character creation that described two different traits: pain tolerance, and pain threshold. One means you don't react, while the other means you don't feel. I was proud of maintaining the first. I have never identified with the second.

I know that I feel pain, but I don't have any practice at noticing it. Rather, I put in too much practice for *not* noticing it. I generally can't identify it until it is miserable and unavoidably interfering with my mood or functioning. The counselor I work with at the place that did my evaluation told me that they did a study where autistic children were more likely to report stomach pain as 'feeling upset'. I felt very validated by hearing that. She pointed out they only did the study on children, but I was undeterred. Different people learn different skills- maybe many autistic adults figure out this one, but I didn't.

So, when I'm asked to rate the pain, I have had to pay attention on purpose. This means that I will hesitate, and seem to be thinking about it. I might choose two numbers as possibilities, or explain the reasons I think those are the ones, based on the scale chart I had read in a doctor's office that is similar to the one posted earlier.

It comes off like I'm crafting a story or convincing myself.

On top of that, those numbers as written on the scale are only the way it is intended to be used. In practice, typical people do not use the scale as though it actually caps out at 10. The face version of the scale makes it worse, as it explicitly ties level of pain to mood and expression of it. I have seen people give unreasonable numbers for what has occurred, and the practitioner just rolls with it. Because the number report itself is so inconsistent as to be halfway useless, they have instead all developed a system where they take the number and cross-reference it with the level of distress they can infer from your behavior.

Someone who claims a 7 while crying is a 7. Someone who claims a 7 by explaining thoughtfully, is not. This is variable, it also depends on your gender and other factors of how you are perceived. If you are a woman, effeminate, seem 'a little too detached', 'too unstable', are part of a mistrusted ethnic group, or any other number of factors, it all makes it worse on an invisible level based on their preconceived beliefs about how you 'should' react to pain for your demographic.

I always speak clearly, even if I'm only half-awake- and would be mortified to cry while speaking to a stranger. My current doctor mentioned there is a book he often recommends that discusses that pain has an emotional component: how you feel about it can matter as much as the actual sensation. I am practiced, I don't panic about pain... although, neurotypical people can never identify whether or not I was panicking anyway.

And that's what the doctors are looking for, to say whether or not the pain actually exists.

Because of this, I find that describing physical symptoms, especially pain, is one of the worst parts of going to any appointment. Around when I was diagnosed I put a lot of effort into searching for resources to give me advice on what to change about how I was handling it, but I couldn't find anything. On the ASAN website, the PDF on advice for doctor's appointments said it's okay to ask them for a blanket. I was so disappointed. I can wear a sweater already- it doesn't help me communicate with the doctor, though.

Identifying the location is fine, if I've thought about it. Easier than severity for certain. Sharp or dull is usually not terrible now, especially if they ask outright; but there are a lot more than that. Stabbing, aching, burning, "pins and needles". I once was asked 'sharp or dull' by a chiropractor and I said 'it feels like nerve pain' because I knew that that was considered a very specific sensation, and one that I could actually recognize. He chided me for jumping to conclusions about the source. I thought I had finally done it correctly

It did used to be more difficult. In general, before I knew that was a normal question people ask, I didn't realize that dull pain actually counted as pain. I would always describe it as 'discomfort'. I had no idea other people were talking about the same sensation I was, using completely different words.

I guess that's what happens when a lot of things that are uncomfortable for other people actually are painful for you. The thought makes me pretty sad, really.

So, thanks for doing this. It would mean a lot to me personally if this was more well-understood, so that more resources could exist.