People in general also get pain. What do they know about it?
- It is sucky: Yes, it is indeed unpleasant.
- I want it to end and know that it will: Yes, the pain is unpleasant but it will not last long. This is not quite our experience of pain. Pain can malfunction.
- Makes you have to rest and unable to work: yes, for acute temporary pain you have to take it easy. Indeed. Must be nice. When it is chronic sort of not our deal.
- The painkillers make me sleepy: What the actual hell? You get painkillers for That. Well, that just grinds my gears. But, hey, soon we will all get Tylenol and a Band-aid. Don’t you know treating pain is evil?
- Sometimes it still hurts when it rains: I will throat punch you.
That got aggressive fast. So… I envy temporary pain. No one wants chronic pain. I think we can all agree on that. I fell down the stairs from vertigo. It sucked. Pain all over but in the tailbone especially as well as the ribs. It went away. And I thought how nice that was. Pain that just… went away. It is nice. Chronic pain. Not nice.
Yes, basically if you want to explain chronic pain you just have to say it is like a temporary injury that just never, ever went away. That is soul-sucking, emotionally and physically draining and varies in intensity from day to day. So sucky. If you want to explain Impact… well tell them it impacts every possible aspect of your life from your social life to that career thing you can’t have. If they don’t get it ask them this one question: Have you ever suffered so much you contemplated that death would be much better more than once in your life? Because with chronic pain Many of us have suicidal ideation… doesn’t mean intent, it means we fantasize about ending the pain in extreme ways.
But what do they know about pain that persists? Some assumptions can happen
- I think it is normal as we get older to have chronic pain of some sort: Chronic pain comes at any age. I had it fairly young. Used to have people tell me I was ‘too young for it.’ And a doctor said, in fact, I was ‘too young for medication.’ What the actual what? Also, I sure as hell hope chronic pain isn’t normal as we get older or I am screwed.
- I have a friend with chronic pain, but then came shopping with me and she was fine. She is just really lazy I think: What the actual hell? You know when you get an injury and one day it really hurts, but the next day it hurts a little less… pain is Variable. And she likely felt that you know. There were consequences for spending time with you. We do have to pace ourselves but on good days we also want to do things. Feel normal for a bit. Pacing, by the way, is fundamental to coping. Pacing isn’t the same as lazy.
- My friend said she was in pain but she was like laughing and smiling, so I doubt That: You can smile and laugh and be in pain because you can be in pain like always. So always is called all your life, so you still have emotions and live your life. To be miserable, screaming and crying all of your entire life would be contrary to things like survival. We try to cope with pain.
- I think it is an excuse to get out of work: I think it is an excuse not to empathize with another human being who knows more about suffering than a paper cut you got while filing. Sorry, that was uncalled for. Fact is, we want to work, some of us do all that we can to maintain any level of work that we can. When it becomes impossible it is like losing a part of ourselves and a shot to our self-worth. But by all means, judge us for it and make us feel guilty. We already punish ourselves for it.
- I can’t see it, therefore I don’t believe they have it: I see. I see. So you must be an atheist. And you clearly don’t believe in atoms or quantum physics either. I am stoic, I admit to that. Twenty years of pain and I have lost most of my pain behaviors unless my pain level is quite high. Oh, not Lost them I should say… they changed to more socially acceptable pain behaviors. So I can barely function in society like I am ‘supposed’ to. With my happy facade. All so dicks like you can doubt me. Brilliant. Just brilliant.
Not everyone has assumptions about pain that persists. I think logically people understand it would be very unpleasant. I don’t think they understand how unpleasant. Or that it comes with concentration problems, focus issues, and fatigue. Or that it is emotionally taxing. Or all the things we must do to cope with it. So of course, they do not get the depth to the experience. But, of course, the totally get this isn’t a fun ordeal. Stigma, on the other hand, is something we come across. That is different. And it comes in all sorts of forms. Including doubting you are in pain at all. A predominant one is that if we did something one day, why not This day? Pacing and variability of pain seem to be harder to explain in a functional way. Or even how sometimes we do something knowing it will cause a lot of pain because we want to… but have planned a lot of recovery days. So it isn’t a normal venture and we suffer those consequences. Or pain can be disabling one day, or week, or month and baseline the next day. And baseline is ‘functional’ pain. Or how exhausting functional pain is… such that you just need a break to recuperate.
The other side we must remember always
The other side of the coin is this; people don’t understand what you’re going through unless you try to explain it. They don’t know what to say. They don’t know how to say it. Sometimes they say the wrong thing. They will make recommendations you have heard… a thousand times before… because they care about you, are thinking about you or just want to help. Most people don’t have inconsiderate or malicious intent usually. They want to be there for you in some way or another. You will lose friends, most of us do, but the ones that matter will stick around. Sometimes people will not get it, at all, and you do not have to validate your pain to them. But most people try. And that is what matters. Do we need them to ‘get’ the true depths of the experience? No, because those that do… get it because they have it. But they will be there.