Invisible pain, and making sense of it
Housekeeping note:
I'm still in survival mode - I'm not reading responses, because I don't have the spare bandwidth, not yet, but I have some stuff I want said. When I get a block of writing done, I post it. I care about responses, and hope to read them soon, but I can only say it will happen when it happens.
Start of post:
The most important thing I want written - and to see widely read, of course - is some information about pain. Because, as I mentioned, I have been in pain most of my life, but I didn't even know it. Part of this is because the doctors said I was fine, so my family thought I was fine, and told me nothing was wrong. After a while, I believed it.
Another big chunk of why it took so long to figure out is, most of what I experience, I've experienced to some degree all my life. If you start having weird feelings one day, you can say "this isn't how things used to feel; although I wouldn't call this 'pain' (nb: yet!), it's certainly unpleasant."
It's a lot harder when you don't have a before/after, and, even then, pain is subtle. For example, when I was 13, I realized that, sometimes, when I was reading, the words just didn't transmit - and I wanted to close my eyes, and sleep, the whole time. Well, you can guess what they decided back then: I was bored, right? That sounded okay to me - don't comic strips and such show people yawning when bored?
Well, I can tell you now, it was pain that made it hard to read, and it was pain that made me close my eyes after reading a few words, but it wasn't any kind of pain I could describe. What I can say, just to make sure we're clear, is that I could keep my eyes open, without any pain, if I looked at anything other than words. It wasn't that my eyes hurt - it was that *reading* hurt.
As I said, this first happened when I was 13, and now, with a lot more experience, I realize how the subtlety of pain also made it difficult. There was a before, and an after, but it was "here, for the first time, my ability to read without pain was outstripped by my need to read, by a lot." I felt the same pain before that day, but never to that level of intensity, where I couldn't make myself plow through what I had to finish. So even if I had known that "sometimes, reading hurts my brain," it still would have taken me a good many years to realize how frequently I felt the pain.
Which brings us to the main point of this post, I suppose. Why do I say "reading hurt"? What does that mean?
I have come up with a three part test of pain. Obviously, this works for regular pain - where else could I create a test from? My point is, if you felt anything that you disliked, that met this test, then I'm betting you had pain. And if you weren't having some oddball neurological pain, well... if what you feel is just like pain to this test, then it seems like it really merits attention and study, to learn what it *is*, if it's not pain.
The first part of the test is that, at some point you are definitely in pain. If you get a literal pinprick, we all agree you were, for a moment, "in pain". Not all pain is pinprick-able, so, I think of something like a minor tension headache. If I ask if you have a headache, when you feel tense, you might need to stop, and think - is it just stiff feeling or painful? And if so, you'll agree, you have a headache, and might even remember having noted it earlier.
So it's either something that can bring you up (like a pinprick) or a continuing unpleasant feeling. You might kinda forget the continuing style, but, you can check-in periodically, and recognize it's still there, until it isn't.
The next part, is, can it increase, and become harder to ignore? Because, again, pain can get worse and become much harder to ignore. It becomes something you can compare, like "yesterday was a better day for this unpleasant feeling than today is." And it eventually becomes something you do compare, even if unconsciously.
If you find that you can remain standing, or, sit near someone you don't like, because they'll do that thing that triggers your neurological pain because they think it's funny to see you react, then, you pay a "standing room only" tithe against the expected pain from the bully's interactions. That's what I mean, you compare it. You can't help but compare it, because it's a real pain signal, see? At the least, when it's intense, you wish it was less intense.
Finally, if it happens, can it make a person scream? I say "can it?" because sometimes you can stifle the scream, while acknowledging the essential screamworthiness.
So, when I said "reading hurt," I meant that there was an unpleasant feeling that I can't describe associated with it, and when I was 13, there was a time when that feeling was *way* more intense than I'd experienced until then. I'm saying it was so bad, it was like sticking my hand in too-hot water. I could force myself to do it, but only in small amounts, and, just like with too-hot water, the more I was burned, the longer I needed to rest before I could dip them in again without yanking them right back out.
Could that feeling make me scream? Yes, but not from reading. The other side of neurological pain is, certain types, at certain levels, literally muck with my brain. If I'm in too much pain, I stop being able to read - letters no longer look like anything but markings. So, can reading cause anything past that point? Literally (in all senses of the word), no.
That same feeling can make me scream, if it catches me by surprise, but I learned not to be around *anyone* if I could still be surprised by that pain, for a long time! So if you've ever been with me, and saw me suddenly wince, without any obvious physical pain, that was as likely as not me stifling a scream that I knew/know will just make me look weird... well, weirder.
You know what really sucks, growing up in invisible pain? Every manifestation of your pain is treated badly - at best, you're a whiner, a precious snowflake demanding special treatment.
You know what really sucks about being an adult, afterward? I've been trained not to expect any special treatment, and to apologize anytime my invisible pain manifests, and explain it's not the other person's fault, and so on, and so forth, and, I still get shit on for whatever reason is invented on the spur of the moment, as soon as a manifestation of your pain is sufficiently bothersome to someone.
Don't get me wrong: socialization difficulties are not the worst part of invisible, horrible, pain. The worst part is usually the 'horrible pain' part. Still, think about how twisted life gets, when you're in pain, but can't even say "I hurt," because the horrible feeling you are experiencing isn't one that makes people go "ouch". So a person can be the bad guy - the HORRIBLE guy! - just for letting pain show, unless everyone agrees that it's okay for that person to show pain.
In my humble opinion, these thoughts give new meaning to "treat people with kindness, because you don't know what burdens they might bear." They, also, might not know, and might be in sore need of kindness, even in the face of crankiness. Some days, everything hurts; it's okay to need to struggle with "cranky".
Anyway: this test isn't perfect, by any stretch, but, if you feel something, that passes this test, and you know _something_ about what causes it, it's worth knowing more about it. Is it serving a good purpose? Sometimes it is, just like "ordinary" pain. Sometimes, it isn't, like phantom limb pain.
Anyway: if you have bad feelings, not something you describe as pain, and it varies, and can definitely get really bad, well, it's probably pain. If it's *not* pain, it's still pretty horrible, so it merits attention! Because, for me, one of the things that was surprisingly difficult was giving myself permission to acknowledge that something was intolerable, just because I had a strong, scream-stifling reaction to it.
No one had *told* me it was intolerable... so how did I dare call it intolerable?
I'm still in survival mode - I'm not reading responses, because I don't have the spare bandwidth, not yet, but I have some stuff I want said. When I get a block of writing done, I post it. I care about responses, and hope to read them soon, but I can only say it will happen when it happens.
Start of post:
The most important thing I want written - and to see widely read, of course - is some information about pain. Because, as I mentioned, I have been in pain most of my life, but I didn't even know it. Part of this is because the doctors said I was fine, so my family thought I was fine, and told me nothing was wrong. After a while, I believed it.
Another big chunk of why it took so long to figure out is, most of what I experience, I've experienced to some degree all my life. If you start having weird feelings one day, you can say "this isn't how things used to feel; although I wouldn't call this 'pain' (nb: yet!), it's certainly unpleasant."
It's a lot harder when you don't have a before/after, and, even then, pain is subtle. For example, when I was 13, I realized that, sometimes, when I was reading, the words just didn't transmit - and I wanted to close my eyes, and sleep, the whole time. Well, you can guess what they decided back then: I was bored, right? That sounded okay to me - don't comic strips and such show people yawning when bored?
Well, I can tell you now, it was pain that made it hard to read, and it was pain that made me close my eyes after reading a few words, but it wasn't any kind of pain I could describe. What I can say, just to make sure we're clear, is that I could keep my eyes open, without any pain, if I looked at anything other than words. It wasn't that my eyes hurt - it was that *reading* hurt.
As I said, this first happened when I was 13, and now, with a lot more experience, I realize how the subtlety of pain also made it difficult. There was a before, and an after, but it was "here, for the first time, my ability to read without pain was outstripped by my need to read, by a lot." I felt the same pain before that day, but never to that level of intensity, where I couldn't make myself plow through what I had to finish. So even if I had known that "sometimes, reading hurts my brain," it still would have taken me a good many years to realize how frequently I felt the pain.
Which brings us to the main point of this post, I suppose. Why do I say "reading hurt"? What does that mean?
I have come up with a three part test of pain. Obviously, this works for regular pain - where else could I create a test from? My point is, if you felt anything that you disliked, that met this test, then I'm betting you had pain. And if you weren't having some oddball neurological pain, well... if what you feel is just like pain to this test, then it seems like it really merits attention and study, to learn what it *is*, if it's not pain.
The first part of the test is that, at some point you are definitely in pain. If you get a literal pinprick, we all agree you were, for a moment, "in pain". Not all pain is pinprick-able, so, I think of something like a minor tension headache. If I ask if you have a headache, when you feel tense, you might need to stop, and think - is it just stiff feeling or painful? And if so, you'll agree, you have a headache, and might even remember having noted it earlier.
So it's either something that can bring you up (like a pinprick) or a continuing unpleasant feeling. You might kinda forget the continuing style, but, you can check-in periodically, and recognize it's still there, until it isn't.
The next part, is, can it increase, and become harder to ignore? Because, again, pain can get worse and become much harder to ignore. It becomes something you can compare, like "yesterday was a better day for this unpleasant feeling than today is." And it eventually becomes something you do compare, even if unconsciously.
If you find that you can remain standing, or, sit near someone you don't like, because they'll do that thing that triggers your neurological pain because they think it's funny to see you react, then, you pay a "standing room only" tithe against the expected pain from the bully's interactions. That's what I mean, you compare it. You can't help but compare it, because it's a real pain signal, see? At the least, when it's intense, you wish it was less intense.
Finally, if it happens, can it make a person scream? I say "can it?" because sometimes you can stifle the scream, while acknowledging the essential screamworthiness.
So, when I said "reading hurt," I meant that there was an unpleasant feeling that I can't describe associated with it, and when I was 13, there was a time when that feeling was *way* more intense than I'd experienced until then. I'm saying it was so bad, it was like sticking my hand in too-hot water. I could force myself to do it, but only in small amounts, and, just like with too-hot water, the more I was burned, the longer I needed to rest before I could dip them in again without yanking them right back out.
Could that feeling make me scream? Yes, but not from reading. The other side of neurological pain is, certain types, at certain levels, literally muck with my brain. If I'm in too much pain, I stop being able to read - letters no longer look like anything but markings. So, can reading cause anything past that point? Literally (in all senses of the word), no.
That same feeling can make me scream, if it catches me by surprise, but I learned not to be around *anyone* if I could still be surprised by that pain, for a long time! So if you've ever been with me, and saw me suddenly wince, without any obvious physical pain, that was as likely as not me stifling a scream that I knew/know will just make me look weird... well, weirder.
You know what really sucks, growing up in invisible pain? Every manifestation of your pain is treated badly - at best, you're a whiner, a precious snowflake demanding special treatment.
You know what really sucks about being an adult, afterward? I've been trained not to expect any special treatment, and to apologize anytime my invisible pain manifests, and explain it's not the other person's fault, and so on, and so forth, and, I still get shit on for whatever reason is invented on the spur of the moment, as soon as a manifestation of your pain is sufficiently bothersome to someone.
Don't get me wrong: socialization difficulties are not the worst part of invisible, horrible, pain. The worst part is usually the 'horrible pain' part. Still, think about how twisted life gets, when you're in pain, but can't even say "I hurt," because the horrible feeling you are experiencing isn't one that makes people go "ouch". So a person can be the bad guy - the HORRIBLE guy! - just for letting pain show, unless everyone agrees that it's okay for that person to show pain.
In my humble opinion, these thoughts give new meaning to "treat people with kindness, because you don't know what burdens they might bear." They, also, might not know, and might be in sore need of kindness, even in the face of crankiness. Some days, everything hurts; it's okay to need to struggle with "cranky".
Anyway: this test isn't perfect, by any stretch, but, if you feel something, that passes this test, and you know _something_ about what causes it, it's worth knowing more about it. Is it serving a good purpose? Sometimes it is, just like "ordinary" pain. Sometimes, it isn't, like phantom limb pain.
Anyway: if you have bad feelings, not something you describe as pain, and it varies, and can definitely get really bad, well, it's probably pain. If it's *not* pain, it's still pretty horrible, so it merits attention! Because, for me, one of the things that was surprisingly difficult was giving myself permission to acknowledge that something was intolerable, just because I had a strong, scream-stifling reaction to it.
No one had *told* me it was intolerable... so how did I dare call it intolerable?