Chronic pain is so overlooked in our society - there's always that delightful response of 'you're imagining it, it can't be that bad,' when yes, it IS that bad, and NO it is not imagined.
Or "you don't look like you're in pain". Well, what do you expect me to look like? Should I keep crying and moaning in public in a desperate bid for sympathy? What does pain look like? Should I tattoo something on my forehead, and if so, what?
I have to wear a heavy duty wrist brace on my left wrist when I go out in public for the simple fact that people do not look where they are going. I discovered this after my first operation and had some woman colide with me even though I was in plaster.
Part of the reason I'm using a cane is to make my pain problem visible. I've a saying - "There are three reasons for having the cane. One, to support me when I'm in pain. Two, to show that I have a legitimate need of that seat on the subway. Three, if you still don't realise that I need some modicum of civility and consideration, I can beat you with it until you start behaving yourself..."
I guess the wrist brace helps a bit in the first two respects, though since your wrist hurts I wouldn't advocate beating anyone with it...
The issue of seats on the subway or on the bus is a very real one to me. I've a friend, a twenty-something man who has rheumatoid arthritis. He's more than once been given a hard time for sitting down on the seats for disabled. I try not to assume that the people sitting there are healthy just because they don't look ill - after all, I try not to look too bad, too.
It does irk me when people put their bags on those seats (or others, unless there are enough free seats). I once had the opportunity to use the wonderful phrase "Is your bag very ill, or can I have that seat?" The person who'd occupied the only two seats with his bags looked extremely silly at that. See, there's all sorts of fun and games to be had when you're carrying a cane!
On the part of having others to share with - I'm on a Swedish mailinglist for women with endometriosis. It helps tremendously. I've made many friends there and whenever one of us is having an extra bad day, there are always others around who know what it feels like and are supportive and helpful. We try to be there for eachother in physical world too, by for instance going with a woman to her doctor when she's afraid and doesn't feel she's getting the treatment and care she should have. It means a lot to many of us. You talk about my dignity - yet I know that there are dozens of women out there who have at least as much pain as I have, and who lack the support network I have in my family, my friends and my very supportive and helpful boss. I know you can't compare two persons' pain - I can't even know for certain how the endo feels in someone else's body, I just know how it feels in mine - but like I said, it could be so much worse. It has been so much worse. I really need to keep that in mind...
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branchandroot
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Date: 2003-12-31 04:48 am (UTC)Chronic pain is so overlooked in our society - there's always that delightful response of 'you're imagining it, it can't be that bad,' when yes, it IS that bad, and NO it is not imagined.
Or "you don't look like you're in pain". Well, what do you expect me to look like? Should I keep crying and moaning in public in a desperate bid for sympathy? What does pain look like? Should I tattoo something on my forehead, and if so, what?
I have to wear a heavy duty wrist brace on my left wrist when I go out in public for the simple fact that people do not look where they are going. I discovered this after my first operation and had some woman colide with me even though I was in plaster.
Part of the reason I'm using a cane is to make my pain problem visible. I've a saying - "There are three reasons for having the cane. One, to support me when I'm in pain. Two, to show that I have a legitimate need of that seat on the subway. Three, if you still don't realise that I need some modicum of civility and consideration, I can beat you with it until you start behaving yourself..."
I guess the wrist brace helps a bit in the first two respects, though since your wrist hurts I wouldn't advocate beating anyone with it...
The issue of seats on the subway or on the bus is a very real one to me. I've a friend, a twenty-something man who has rheumatoid arthritis. He's more than once been given a hard time for sitting down on the seats for disabled. I try not to assume that the people sitting there are healthy just because they don't look ill - after all, I try not to look too bad, too.
It does irk me when people put their bags on those seats (or others, unless there are enough free seats). I once had the opportunity to use the wonderful phrase "Is your bag very ill, or can I have that seat?" The person who'd occupied the only two seats with his bags looked extremely silly at that. See, there's all sorts of fun and games to be had when you're carrying a cane!
On the part of having others to share with - I'm on a Swedish mailinglist for women with endometriosis. It helps tremendously. I've made many friends there and whenever one of us is having an extra bad day, there are always others around who know what it feels like and are supportive and helpful. We try to be there for eachother in physical world too, by for instance going with a woman to her doctor when she's afraid and doesn't feel she's getting the treatment and care she should have. It means a lot to many of us. You talk about my dignity - yet I know that there are dozens of women out there who have at least as much pain as I have, and who lack the support network I have in my family, my friends and my very supportive and helpful boss. I know you can't compare two persons' pain - I can't even know for certain how the endo feels in someone else's body, I just know how it feels in mine - but like I said, it could be so much worse. It has been so much worse. I really need to keep that in mind...