Things People Say... to the Invisibly Disabled
People say a lot of things to and about folks with invisible chronic illnesses. I think most of the folks on my flist have heard it all before, aimed at them or people they know and love. Some of it's cruel. Some of it is unthinking. Some of it is well-meant but painful. A lot of these things fall into general categories.
Have you tried...?
This one is almost always well-meant but it doesn't do much for me. Usually it's folks who have only recently met me who use this one. It doesn't seem to occur to them that, having lived with my various conditions most of my life, chances are I've tried it unless it's something that's just come out of the newest research.
Drugs, alternative therapies, magical and spiritual work, physical therapy, acupuncture; I've tried pretty much everything. I've done years of research online and talked to dozens of doctors over the years. Some things have helped. Some have been useless. Some have caused problems for various reasons.
I understand and appreciate that folks are sympathetic and that they'd like to help. Something that may have worked for one of your close friends may have left me with an allergic reaction. Something that works for me might leave them twitching in a hospital.
There are a lot worse things in the world than this one.
But you look fine.
I know. That doesn't mean I am. It means I'm really good at hiding my weakness, just like any sensible animal. Appearances are deceiving; we all know this. Think of the days when you're feeling a little under the weather but you put a good face on anyway because you know you have to. That's my entire life.
You don't really need those drugs. It's all mind over matter, after all.
The Pagan community is infamous for this one. After all, magic and believing can fix everything, right? Especially when it's something like depression or anxiety/panic problems or flashbacks and nightmares. Nothing is so problematic that it can't be defeated with a little positive thinking and some herbal tea, according to this crowd.
Except that I've worked for years on all those techniques. I've done the magic. I've tried the positive thinking. I've sipped the herbal teas. And you know what? My brain chemistry is fucked up. I've had major depression since I was a kid -- I was a terribly depressed little bugger, and sick as a dog a lot of the time.
Taking antidepressants doesn't fix me, but it gives me solid ground to stand on so that I don't feel suicidal all the time, and that lets me work on fixing the rest of my life so that I can actually tolerate living and even have fun and do productive things like write my books and articles, and teach workshops, and participate on email lists. When you're dealing with both suicidal depression and chronic pain, it's too much to bear. Making the depression bearable means that there's more energy to devote to dealing with the pain and trying to make the rest of life tolerable.
Yes, I do need those drugs. Just like people with life-threatening allergies need something to keep them breathing until the physical reaction to the allergen passes. The drugs I take help keep me alive and help make that life worth living. Nobody would expect someone with a broken leg not to get it cast and use a crutch. A broken leg is temporary. Screwed brain chemistry and physically changed brain structure (yes, they can show physical changes in the brain from PTSD) are generally permanent. The best I can do is work with what I have. It's like a broken leg that's set badly -- there will always be a limp and some pain, but at least I can walk.
We create our own reality. You must have done something in a past life that brought this to you, or chosen to live with this for your life-lessons.
If you believe this, f*ck you. Tell this to some starving child in Africa or the women in the Middle East who are being stoned because a man looked at them the wrong way. Tell this to someone you know who happened to be born black in America or Jewish during the Holocaust. I didn't create my illness. I didn't choose it in this life or any other. Sometimes shit just happens.
If I manage to learn and grow in dealing with this challenge, fine. That's great, but it's not why it happened. These things happened because I was abused, raped, and otherwise mistreated. Some of these things happened because my own body has, essentially, turned against me. It's not karma in the sense being implied here, it's just what is. Nobody has that kind of godlike control over reality, sorry folks. Hate to harsh your buzz.
Just get over it. If you'd just let this go, you'd be fine. There must be some benefit in it for you to be clinging to it so much.
What benefit? Constant pain? Insomnia, flashbacks, nightmares, depression, anxiety, and being unable to leave the house on a regular basis? The snotty superiority of people who use these lines?
I'm not ill because I want attention. I'm not ill because I want people to do things for me. I'm not ill because I'm lazy or stupid. I'm not clinging to my pain, I'm doing everything I can to function in spite of it. For the most part, I've managed to beat the odds. I'm not dead or addicted to something or living under a bridge or in prison, like a lot of people who've had experiences similar to mine.
My friends describe me as courageous, loyal, stubborn, and intelligent. My last employer said I worked like a team of oxen. For the most part I treat my situation with a reasonable sense of humor. I laugh and sing and sometimes have wonderful days where I appreciate life to the fullest. That doesn't mean I don't hurt like hell.
Sure, in my personal case the VA keeps a roof over my head with a pension -- it's a hell of a lot better than living under a bridge -- but I'd trade the pension in a heartbeat if I was healthy and whole, and be happy to work for what I have, just like everyone else around me. Wouldn't you?
I had X happen and I'm not traumatized, so you're obviously faking.
Different people react differently to trauma, just like we react differently to medications, to food, and to environmental stimulus. I get on pretty well in the Pacific Northwest. I love it here, but I'd shrivel up and be miserable in the desert Southwest. Other people would mold here and die of it, while cacti make them exceedingly happy.
What pains me most is that I get this one from my dad, who served in the Korean War. The worst part of it is that he's lying to himself -- he does have PTSD and it's fucked up his life and everybody else's around him in some way or another. Yet as far as he's concerned it's my fault that my life is fucked up because I didn't listen to him and I'm just faking my way through the whole disability thing for a paycheck. Let's ignore the fact that I had to fight the government for 12 years to get that paycheck and that they're not exactly known for just handing out pensions for no reason.
A variant on this one that I got from a VA psychiatrist was women have miscarriages all the time, and they're not traumatized by it. As you might guess, this psychiatrist had a penis. Miscarriage is a taboo subject in our culture for a variety of reasons. Just because women don't talk about it doesn't mean they're not traumatized by it.
You keep canceling things on me. You're a flake.
I'm truly sorry that sometimes my body won't let me do things with you. It doesn't mean I don't want to or that I'm a flake. Sometimes the fibro fog means I can't even remember if I've eaten today or if I've taken my medications. Sometimes the pain is too much to leave the house. Sometimes I'm too tired to take the dog out so he can poop. None of this means that I don't like you or care for you or even love you, it just means I can't do all the things I want to. I'm not doing any of this deliberately to hurt your feelings, trust me. If I can't even remember what day it is sometimes, I may very well forget that we'd scheduled something. I do keep a calendar and sometimes things don't get into it, but I do try to look at it at least once a day. Even when things are in the calendar, I get mixed up or lose a day. When I do remember but I feel awful, I will always try to call or email or text and let you know I won't be there.
This is why I can't hold down a job. It's why I'm on a disability pension. My health is unreliable sometimes. The more stress I'm under, the less reliable it is. I wish it were different. I know it frustrates you. Imagine how much it must frustrate me.
I could continue this list for quite some time. There are a lot of things people say that are hurtful -- assumptions based on my gender, on how I look, on how I present myself.
Things that people say that I appreciate:
Do you want a hug?
Most of the time, yeah. If you're a friend and you're not being skeezy about it, I'd love a hug. They help immensely. If I say no, it's usually because if you touch me it'll just make the pain worse, or I'm having a particularly triggery day.
Would you like some help with that?
If this is said with kindness and not with misplaced pity, it's a lovely thing to ask. Sometimes I do need help. Most of the time, if I do, I try to ask. Sometimes I'm too tired to think of asking and other times just a little too proud. If I say no, please respect that. It doesn't mean I don't appreciate the offer.
Do you need a break?
I can get locked into things and forget the time entirely. Same with food. I forget to eat. I forget to sit down. I forget to go to bed. Sometimes a reminder is really helpful.
Would you like to go do X with me?
Even if I can't, I love being invited. Thank you.
I love you.
But only if you really mean it. Love comes in all shapes, sizes, and flavors. Friends don't say it to each other nearly often enough.
SOURCE
Have you tried...?
This one is almost always well-meant but it doesn't do much for me. Usually it's folks who have only recently met me who use this one. It doesn't seem to occur to them that, having lived with my various conditions most of my life, chances are I've tried it unless it's something that's just come out of the newest research.
Drugs, alternative therapies, magical and spiritual work, physical therapy, acupuncture; I've tried pretty much everything. I've done years of research online and talked to dozens of doctors over the years. Some things have helped. Some have been useless. Some have caused problems for various reasons.
I understand and appreciate that folks are sympathetic and that they'd like to help. Something that may have worked for one of your close friends may have left me with an allergic reaction. Something that works for me might leave them twitching in a hospital.
There are a lot worse things in the world than this one.
But you look fine.
I know. That doesn't mean I am. It means I'm really good at hiding my weakness, just like any sensible animal. Appearances are deceiving; we all know this. Think of the days when you're feeling a little under the weather but you put a good face on anyway because you know you have to. That's my entire life.
You don't really need those drugs. It's all mind over matter, after all.
The Pagan community is infamous for this one. After all, magic and believing can fix everything, right? Especially when it's something like depression or anxiety/panic problems or flashbacks and nightmares. Nothing is so problematic that it can't be defeated with a little positive thinking and some herbal tea, according to this crowd.
Except that I've worked for years on all those techniques. I've done the magic. I've tried the positive thinking. I've sipped the herbal teas. And you know what? My brain chemistry is fucked up. I've had major depression since I was a kid -- I was a terribly depressed little bugger, and sick as a dog a lot of the time.
Taking antidepressants doesn't fix me, but it gives me solid ground to stand on so that I don't feel suicidal all the time, and that lets me work on fixing the rest of my life so that I can actually tolerate living and even have fun and do productive things like write my books and articles, and teach workshops, and participate on email lists. When you're dealing with both suicidal depression and chronic pain, it's too much to bear. Making the depression bearable means that there's more energy to devote to dealing with the pain and trying to make the rest of life tolerable.
Yes, I do need those drugs. Just like people with life-threatening allergies need something to keep them breathing until the physical reaction to the allergen passes. The drugs I take help keep me alive and help make that life worth living. Nobody would expect someone with a broken leg not to get it cast and use a crutch. A broken leg is temporary. Screwed brain chemistry and physically changed brain structure (yes, they can show physical changes in the brain from PTSD) are generally permanent. The best I can do is work with what I have. It's like a broken leg that's set badly -- there will always be a limp and some pain, but at least I can walk.
We create our own reality. You must have done something in a past life that brought this to you, or chosen to live with this for your life-lessons.
If you believe this, f*ck you. Tell this to some starving child in Africa or the women in the Middle East who are being stoned because a man looked at them the wrong way. Tell this to someone you know who happened to be born black in America or Jewish during the Holocaust. I didn't create my illness. I didn't choose it in this life or any other. Sometimes shit just happens.
If I manage to learn and grow in dealing with this challenge, fine. That's great, but it's not why it happened. These things happened because I was abused, raped, and otherwise mistreated. Some of these things happened because my own body has, essentially, turned against me. It's not karma in the sense being implied here, it's just what is. Nobody has that kind of godlike control over reality, sorry folks. Hate to harsh your buzz.
Just get over it. If you'd just let this go, you'd be fine. There must be some benefit in it for you to be clinging to it so much.
What benefit? Constant pain? Insomnia, flashbacks, nightmares, depression, anxiety, and being unable to leave the house on a regular basis? The snotty superiority of people who use these lines?
I'm not ill because I want attention. I'm not ill because I want people to do things for me. I'm not ill because I'm lazy or stupid. I'm not clinging to my pain, I'm doing everything I can to function in spite of it. For the most part, I've managed to beat the odds. I'm not dead or addicted to something or living under a bridge or in prison, like a lot of people who've had experiences similar to mine.
My friends describe me as courageous, loyal, stubborn, and intelligent. My last employer said I worked like a team of oxen. For the most part I treat my situation with a reasonable sense of humor. I laugh and sing and sometimes have wonderful days where I appreciate life to the fullest. That doesn't mean I don't hurt like hell.
Sure, in my personal case the VA keeps a roof over my head with a pension -- it's a hell of a lot better than living under a bridge -- but I'd trade the pension in a heartbeat if I was healthy and whole, and be happy to work for what I have, just like everyone else around me. Wouldn't you?
I had X happen and I'm not traumatized, so you're obviously faking.
Different people react differently to trauma, just like we react differently to medications, to food, and to environmental stimulus. I get on pretty well in the Pacific Northwest. I love it here, but I'd shrivel up and be miserable in the desert Southwest. Other people would mold here and die of it, while cacti make them exceedingly happy.
What pains me most is that I get this one from my dad, who served in the Korean War. The worst part of it is that he's lying to himself -- he does have PTSD and it's fucked up his life and everybody else's around him in some way or another. Yet as far as he's concerned it's my fault that my life is fucked up because I didn't listen to him and I'm just faking my way through the whole disability thing for a paycheck. Let's ignore the fact that I had to fight the government for 12 years to get that paycheck and that they're not exactly known for just handing out pensions for no reason.
A variant on this one that I got from a VA psychiatrist was women have miscarriages all the time, and they're not traumatized by it. As you might guess, this psychiatrist had a penis. Miscarriage is a taboo subject in our culture for a variety of reasons. Just because women don't talk about it doesn't mean they're not traumatized by it.
You keep canceling things on me. You're a flake.
I'm truly sorry that sometimes my body won't let me do things with you. It doesn't mean I don't want to or that I'm a flake. Sometimes the fibro fog means I can't even remember if I've eaten today or if I've taken my medications. Sometimes the pain is too much to leave the house. Sometimes I'm too tired to take the dog out so he can poop. None of this means that I don't like you or care for you or even love you, it just means I can't do all the things I want to. I'm not doing any of this deliberately to hurt your feelings, trust me. If I can't even remember what day it is sometimes, I may very well forget that we'd scheduled something. I do keep a calendar and sometimes things don't get into it, but I do try to look at it at least once a day. Even when things are in the calendar, I get mixed up or lose a day. When I do remember but I feel awful, I will always try to call or email or text and let you know I won't be there.
This is why I can't hold down a job. It's why I'm on a disability pension. My health is unreliable sometimes. The more stress I'm under, the less reliable it is. I wish it were different. I know it frustrates you. Imagine how much it must frustrate me.
I could continue this list for quite some time. There are a lot of things people say that are hurtful -- assumptions based on my gender, on how I look, on how I present myself.
Things that people say that I appreciate:
Do you want a hug?
Most of the time, yeah. If you're a friend and you're not being skeezy about it, I'd love a hug. They help immensely. If I say no, it's usually because if you touch me it'll just make the pain worse, or I'm having a particularly triggery day.
Would you like some help with that?
If this is said with kindness and not with misplaced pity, it's a lovely thing to ask. Sometimes I do need help. Most of the time, if I do, I try to ask. Sometimes I'm too tired to think of asking and other times just a little too proud. If I say no, please respect that. It doesn't mean I don't appreciate the offer.
Do you need a break?
I can get locked into things and forget the time entirely. Same with food. I forget to eat. I forget to sit down. I forget to go to bed. Sometimes a reminder is really helpful.
Would you like to go do X with me?
Even if I can't, I love being invited. Thank you.
I love you.
But only if you really mean it. Love comes in all shapes, sizes, and flavors. Friends don't say it to each other nearly often enough.
SOURCE
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