Chronic pain (long)
Jul. 24th, 2006 03:18 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
gwynhefarSome thoughts on chronic pain . . .
Those who have never had chronic pain can't possibly understand what it's like. Chronic pain, particularly intermittant chronic pain, is one of the least understood conditions out there.
People try to tell you you're making it up: 'What do you mean you can't do that? You look fine to me!' Just because you can't see pain doesn't mean it's not there. Just because I'm not on crutches or I'm not limping doesn't mean I don't hurt. And yes, I can hurt just sitting here.
If it's intermittant, you have to justify your good days. 'What do you mean you can't come into work today? I saw you out and about yesterday, but *now* you're telling me you can't work. Yeah, right.' Yeah well, yesterday was yesterday, today is today. Just because yesterday was a good day doesn't mean I'm not in pain today.
The pain rules your life. I'm hesitant about making social commitments, particularly ones that require activity or long travel. Because I can't know that I'll be up to going out on any particular day.
If I say I can't do something, don't argue with me. I know my limitations. I may be fine to go out and eat where I can get up occasionally and stretch, but I can't sit in one place through an entire movie. I can go walking in the park, but I cannot sit in a car for 3 hours to go somewhere. I can swim in your pool, but I can't go to the zoo with you -- too much walking. Trust me, these are real limitations. Don't say I look fine. Don't assume that the fact that I say I can't go out with you today means I'm avoiding you. It means I'm in pain and I can't go out. Maybe you'd like to come over? We can watch movies while I lie on my couch on a heating pad. Yes, that really is all I'm good for today. Try me again tomorrow.
And a realisation I came to just recently: chronic pain sufferers have a relationship with their pain that is not unlike the relationship between an abused person and their abuser. We make excuses. We blame ourselves. It's my fault really. I shouldn't have gone to that concert last night. I should have known better. I overdid it and so I deserve not to be able to get out of bed today. I was being silly. If I didn't do all those stupid things like going to concerts and spending the day walking around sightseeing or taking that long trip out of town then I wouldn't hurt so much. So it's my own fault, really. I should have known better . . . We get to the point where we no longer believe that we deserve to be able to do normal things.
We feel shame. We don't want people to know that we simply aren't able to do something because of the pain. It makes us feel weak. Because we should be stronger. We should be able to handle it. And most of us have people who don't understand telling us all the time that we should be able to do things we can't do, and so that shame is reinforced. We either find other excuses ("I didn't really want to go out today anyway, I'm not in the mood") or we grit our teeth and do it, knowing we'll pay the price later (which will, of course, be our own fault).
Chronic pain has a life of its own, and it affects every aspect of the life of the sufferer. People who suffer from chronic pain are more likely to also suffer from depression than non-chronic pain sufferers. Living your life in constant pain with little or no relief is one of the most discouraging and frustrating feelings imaginable. There will be times when you will want to give up. When you would do almost anything just to make the pain stop. There will be times when you will want to throw a temper tantrum that would put a two-year-old to shame. To scream and hit and throw things. You will cry tears of pain and tears of frustration and sometimes you won't know which is which.
The only thing I can ask of you is this: If you know someone who has chronic pain, let them know that they are not alone. Let them know that you understand their limitations and that you will be happy to work within them. Let them know that it is *not* their fault. Let them know that you understand that you can't fix it, but that you are willing to listen to their fears and their frustrations. Understand that their pain is like an unwanted tagalong that will always have to be factored into any plans. Let them know that you understand this and that you don't mind. Let them know that they never have to justify either their good days or their bad days to you. Rejoice with them in the former and be there for them in the latter. They will appreciate it more than you can ever know.
Those who have never had chronic pain can't possibly understand what it's like. Chronic pain, particularly intermittant chronic pain, is one of the least understood conditions out there.
People try to tell you you're making it up: 'What do you mean you can't do that? You look fine to me!' Just because you can't see pain doesn't mean it's not there. Just because I'm not on crutches or I'm not limping doesn't mean I don't hurt. And yes, I can hurt just sitting here.
If it's intermittant, you have to justify your good days. 'What do you mean you can't come into work today? I saw you out and about yesterday, but *now* you're telling me you can't work. Yeah, right.' Yeah well, yesterday was yesterday, today is today. Just because yesterday was a good day doesn't mean I'm not in pain today.
The pain rules your life. I'm hesitant about making social commitments, particularly ones that require activity or long travel. Because I can't know that I'll be up to going out on any particular day.
If I say I can't do something, don't argue with me. I know my limitations. I may be fine to go out and eat where I can get up occasionally and stretch, but I can't sit in one place through an entire movie. I can go walking in the park, but I cannot sit in a car for 3 hours to go somewhere. I can swim in your pool, but I can't go to the zoo with you -- too much walking. Trust me, these are real limitations. Don't say I look fine. Don't assume that the fact that I say I can't go out with you today means I'm avoiding you. It means I'm in pain and I can't go out. Maybe you'd like to come over? We can watch movies while I lie on my couch on a heating pad. Yes, that really is all I'm good for today. Try me again tomorrow.
And a realisation I came to just recently: chronic pain sufferers have a relationship with their pain that is not unlike the relationship between an abused person and their abuser. We make excuses. We blame ourselves. It's my fault really. I shouldn't have gone to that concert last night. I should have known better. I overdid it and so I deserve not to be able to get out of bed today. I was being silly. If I didn't do all those stupid things like going to concerts and spending the day walking around sightseeing or taking that long trip out of town then I wouldn't hurt so much. So it's my own fault, really. I should have known better . . . We get to the point where we no longer believe that we deserve to be able to do normal things.
We feel shame. We don't want people to know that we simply aren't able to do something because of the pain. It makes us feel weak. Because we should be stronger. We should be able to handle it. And most of us have people who don't understand telling us all the time that we should be able to do things we can't do, and so that shame is reinforced. We either find other excuses ("I didn't really want to go out today anyway, I'm not in the mood") or we grit our teeth and do it, knowing we'll pay the price later (which will, of course, be our own fault).
Chronic pain has a life of its own, and it affects every aspect of the life of the sufferer. People who suffer from chronic pain are more likely to also suffer from depression than non-chronic pain sufferers. Living your life in constant pain with little or no relief is one of the most discouraging and frustrating feelings imaginable. There will be times when you will want to give up. When you would do almost anything just to make the pain stop. There will be times when you will want to throw a temper tantrum that would put a two-year-old to shame. To scream and hit and throw things. You will cry tears of pain and tears of frustration and sometimes you won't know which is which.
The only thing I can ask of you is this: If you know someone who has chronic pain, let them know that they are not alone. Let them know that you understand their limitations and that you will be happy to work within them. Let them know that it is *not* their fault. Let them know that you understand that you can't fix it, but that you are willing to listen to their fears and their frustrations. Understand that their pain is like an unwanted tagalong that will always have to be factored into any plans. Let them know that you understand this and that you don't mind. Let them know that they never have to justify either their good days or their bad days to you. Rejoice with them in the former and be there for them in the latter. They will appreciate it more than you can ever know.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2006-07-24 10:53 pm (UTC)Re: chronic illness and depression: tons of studies support you. Sadly, it's not only chronic pain but chronic illness. If you haven't read Against Depression yet, you should. I recommend this book like crazy, but it really gives the reader a great understanding of how depression is a physical disease. Also the fact that no matter why you have depression (predisposition for depression for whatever reason, or via a different chronic disease), it looks exactly the same in the brain.
Good luck to you Gwyn. I can't imagine how awful it is, but I know it is from my friend. And here's hoping people stop thinking of themselves and how awful they think you're being first and start realizing what's really going on with you.
no subject
Date: 2006-07-25 01:23 pm (UTC)no subject
Date: 2006-07-26 04:06 am (UTC)My bondmate's dad was down for about a month with pancreatitis, so it boggles me that someone with chronic pancreatitis is functional in any day-to-day way.
no subject
Date: 2006-07-26 11:35 pm (UTC)Like I said, serious heavy-duty painkillers. As in narcotics. And she also refuses to give in to it. But her weekends are very often shot from getting through the week.