naamah_darling: The Punisher skull with a red ribbon barrette. (Punisher Ribbon)
[personal profile] naamah_darling
Okay, I wrote this as a response to someone on Facebook asking for advice on a chronic illness support group, and the response came out so honkin' long, and so potentially useful, I wanted to post it here. Permission to link, as with anything I post publicly, is granted.

The problem:

A) They are having problems telling people that their limits have changed because of their illness. Like a lot of folks in this situation, it's upsetting to them to admit that they can't do what they used to be able to do.

B) People are assuming that this person's illness doesn't have that much impact, because they still look happy and don't look sick.

C) They still push themselves to act as though nothing has changed, even though they know acting like nothing's wrong is not good for them.

They want to know how to be clear about their new boundaries with the people in their life.

Guys, this is such a common problem. If I asked everyone with a chronic/invisible/mental illness who has not had to deal with this to raise their hands, I would expect crickets and cat snoring.

The super-quick elevator version:

It gets easier with practice pretty fast. Be specific and firm about what you need, be patient with yourself, do not get drawn into arguments over whether something is possible, and remember that you are not the problem here.

Here's the TL; DR version:

Being explicit about your limits with people close to you gets easier. Having accommodating and understanding friends and family is obviously helpful, but that's not entirely within your control. Sometimes they are actively hostile, and dealing with that is a whole different barrel of fish, so it's possible not much of what I say will apply to abusive situations like that.

When this shit started for me, I had to fight the urge to downplay everything because I found it embarrassing to have limitations. If there was a 70% chance that I would not be able to do something and not feel like shit afterward, I'd be like "Yeah, I'll do it!" and then kind of soldier through and – surprise – suffer for it later, meaning I could do even less. Diminishing returns.

When discussing whether or not to do something, I try to be really specific about what I'll need. "I'm not sure how long I'll be able to stay" is useful as long as I remember YO, NAAMAH, YOU DON'T HAVE TO PUSH YOURSELF TO STAY OUT LONGER JUST SO YOU CAN LOOK NORMAL TO PEOPLE WHO ALREADY KNOW THAT YOU ARE NOT NORMAL.

"I'll have to leave at 9:00" is useful, specifics are useful. Examples from me and from friends: "I will need to eat twice while we are out." "I need to make sure there are bathrooms. I don't mean 'maybe we can find a place' or 'there's a portable toilet one block over' but 'there is definitely a bathroom available'." "I'm down with the road trip, but if I start having a panic attack we'll need to pull over and let me walk it off." "I can go, but I cannot stay the night/share a room, I need to sleep in my own bed/need my own space."

If I can't do something, I try to be up front about it, and I try to be explicit about why. Sometimes people try to be helpful and say stuff like "If you have a problem with X, we can do Y and Z!" and negotiate around a "nope". A little of this is fine, but some people have a tendency to deploy this the way Nice Guys will argue with women who turn them down for dates. "You're busy on Friday? How about Saturday." "You don't want to do dinner? How about drinks at the pub?" It's not always deliberate assholery, but it can get annoying fast.

That's when it is good to say something like "Even optimally, this is something I cannot do. This sucks for me, and I know it sucks for you too, and I'm sorry we will not be able to do ABC together. Maybe we can try again some other time/get together at home/chat later on Skype/exchange letters via Weasel Express/whatever the cool disabled kids do these days."

Getting drawn into debates/arguments, even well-meant ones (on their part), allowing yourself to be drawn out to defend your boundaries, is not an effective strategy, nor an efficient way to allocate already scarce resources.

"I know that in our quest to have awesome friendsfun, we've gone to the movies a lot in the past, but I've come to realize they are a really nasty panic trigger for me. Obviously, that makes them NOT fun. I need to cut way back on the times I go. I apologize, and I'm not happy about it either, but I won't be joining you this Sunday."

"But X theater has comfy seats and is quiet and hardly anyone goes there even though they serve free drinks and provide puppies to snorgle and are in every way ideal! We can pick you up and everything!"

At this point it's tempting to explain why those things don't help in your particular case.

If they are a very good friend, you might go ahead and do that explaining, because it can save effort later by helping them understand the hows and whys of your limits.

If they are a chronic negotiator, and you fucking know the people I mean, don't do it.

Don't.

Do not debate. Do not explain. Do not justify.

Go straight to: "Thank you, but it's not doable right now. I know it sucks. I want to hear about it, though, and maybe we can watch it on Fred's 2000-inch TV when it hits Blu-Ray."

End of conversation. Seriously, that can be the end of the part of the conversation where you expend any effort whatsoever beyond typing a half-dozen words and clicking "send". If they persist, drop the politeness and hit neutral. "Sorry, I can't come." Repeat.

Is it fun? NOPE. It's awkward. And if they persist in not respecting your limits and become pushy about it? Fuck it! LET IT BE AWKWARD. That doesn't come from YOU. You aren't being rude. You're treating your boundaries as a given that does not need to be defended because that is what boundaries are.

People mostly adjust, and the ones that don't adjust will have to be handled separately, because you don't necessarily know who those will be. (Sometimes you do. Sometimes you think you do, and then they surprise you by being okay with it.)

A big part of it for me was getting used to making those decisions without feeling ashamed.

"No, I cannot do the thing."

"No, I should not eat that/go there/watch this."

God, I felt so . . . I'm gonna use the word "lame," because while it's ableist, THE WAY I WAS THINKING ABOUT MYSELF WAS ABLEIST. That WAS the word I was thinking, and by itself, that encapsulates what was WRONG about how I was thinking.

I don't know if you – the original poster, or any random reader – are as self-hating as I was or if it's more of a "Jesus, I'm such a party pooper" thing as opposed to "Oh, god, I am fucking worthless and should go and immediately smother myself in a vat of concrete" thing. But dude, I was being such a serious dick to myself about it.

That's understandable, and I have major sympathy for people who are at that stage.* I am not criticizing! But getting past that was a big part of me being able to make my needs known. I had to stop being ashamed of them. (And clearly you, OP, already realize this is a problem, so I apologize for saying "stop feeling shitty about the way you are" in response to "how do I stop feeling shitty about the way that I am". But it's something I thought it might be good to open up and poke at, and to demonstrate that yo, I know those feels. And, lucky for you, I covered this in a vaguely relevant post quite recently.)

Part of getting people to accept your new normal is being firm about your new boundaries, and even when you are used to it that can be an awkward thing to have to do. But it gets easier! And when you respect your boundaries, you will probably find you actually have more spoons and feel better about yourself in general because you're doing what's right for you and allocating your resources more effectively.

Respecting the panic disorder bullshit that was sucking up 50% of my social energy freed up spoons I had been having to use on cleaning up the fallout. It was like . . . like having someone come into my kitchen and do the cleaning after I cooked a huge meal, and put everything away.

Suddenly I didn't have to worry about the messy aftermath as much, and could just focus on cooking, i.e., dealing with my shit as it happened. And that freed up a ton of energy I was able to use elsewhere! It didn't stop the panic attack stuff, but not spending two days jumping at shadows because I'd pushed myself too far meant I had the energy to interact in ways I found safe, or do things that didn't trigger it in any way. I had to change how I did things and am not and assume I never will be as capable as I was before it was an issue, but it was ultimately a net gain over how I functioned while I was trying to cover it up. And lo and behold, I stopped feeling (as) shitty about myself as soon as I realized that working within my limits didn't always mean a lessening of what I was doing or who I was.** It's a form of self-respect, and that is a thing that I strive to have.

Which is a long-ass way of saying to the OP that what you are doing is awesome, and keep doing it, and you will see benefits. It gets easier, and leads to good things, and I am giving you a huge thumbs up for taking even the smallest steps toward doing it.

Another thing I found helpful, although this is not an option available to everyone for many reasons, or one that works on certain sets of friends/relatives (some perceive it as whining or pity-fishing) is to write about what it's like for me. I do that here on Livejournal, less on Facebook, but this is mostly where my friends get me-updates.

The "care and feeding of" sheet that detailed how to handle me when I'm having a freakin' panic attack apparently proved helpful to people close to me. That's the kind of thing I mean. (And only a real dick of a person could perceive that post as fishing for pity.)

Someone in comments on Facebook mentioned linking toThe Spoon Theory. I've found that can be incredibly helpful. Not so much if they are unimaginative or jerks, but usually it helps clarify what it's actually like, and why our tolerances seem to vary randomly.

Something people reading this might need to hear:

Ultimately, even people who LOVE you and WOULD change things for you, and move heaven and earth to be with you, cannot do that if they don't know what you need, so the more explicit you are about your limits, the more direct you are about your needs, the better things will be. This can be embarrassing, but all avoiding it does is spare you embarrassment. It does not stop your discomfort, it does not avert misunderstanding, and it does not make things better in the long run. All it means is you will be confronted with embarrassing moments more often, and have to expend the energy to negotiate that.

When you are explicit about boundaries of any kind, some people take it poorly, and think that you are faking, or are being lazy. They may be offended that you aren't prioritizing them over other things, or will assume that you are only looking for pity or are complaining just to complain, or are wallowing in it. (That last one is extra special.)

Those people have a PROBLEM. They have a problem understanding chronic illness. They have a problem understanding not being healthy enough to be able to do whatever they like most of the time. They have a problem understanding that a person can be sick and not look it, or that they might be fine while something is going on, but have to pay for it later, when nobody sees it.

They have a problem.

That problem? Is not YOU!

It is their problem, and while being friends with someone does sort of obligate you to try to build half a bridge over communication gaps where they genuinely do not get it because they don't have the requisite background, nothing obligates you to bridge the whole thing, and short of circumstances where you have to make nice with a nasty person for reasons of survival (Hello, several of us! Hello, past me!) there's nothing that obligates you to keep people around who refuse to adapt or do not want to understand.

You don't have to terminate the relationship with extreme prejudice and burn bridges, but some friendships cannot take the strain, they fade, and things change. Maybe you fall out of friendslove. That happens. It's not because YOU are a problem. Incompatibility between two people is not a problem unless one of them is deliberately being a dickbag.

If you have a chronic/invisible illness, you are not being a dickbag. Not on purpose and NOT IN ANY OTHER WAY. You are being you, and you are a person who, like ALL people, needs certain things to be able to function. Yours are just more numerous, and not in line with the lives most people accept as normal. Sometimes the other person isn't being a dickbag either, the friendship has just changed enough that neither party has anything much to offer. That's okay (even if it feels shitty). You won't lose everyone to that.

If they can't handle the price of admission to Awesome Friendship, starring You, when all they have to pay is attention to what you are saying and where you draw the lines, that's their problem. You don't have to try to solve it for them, you aren't obligated to do all the work, and sometimes it's not even possible to lead the metaphorical friend-horse to water, let alone make it drink. People gotta deal with their own shit, you know? You can't own it for them. They gotta own it for themselves.

I'd say don't sweat the people who don't get it, but we often can't help it, because those can be painful relationships to have problems with. I can say that not respecting your own limits will mean that you have real problems actually expanding them, if that is possible (it often is, but is not always, and that's okay . . . don't blame yourself for getting dealt a shitty hand) and part of respecting your own limits is enforcing them.

Other people don't gotta like it, but good ones learn to deal. Keep those people around.

The others will find friends who suit them better. Good luck to them.

By all means, link if you want to.

* And I still am, on bad days; I suspect this is a "stage" that I will experience from time to time for the rest of my life, and I'm more or less okay with that by now

** Only sometimes. Sometimes it is. Illness is isolating, and it makes parts of our lives smaller. An illness that never ends, and maybe becomes progressively worse, is even more isolating. It pares away parts of your life in a brutal way that most people have trouble imagining. It is hard and sometimes impossible not to feel the circumstances of chronic illness as an actual diminishing of self, as a diminishing of the value of your self and your life. I'm still finding my way through that one, personally. It is very hard work, and you do not have to take it well when people demand things of you that make that work even harder, or impossible.

Date: 2013-08-23 04:22 am (UTC)
stormerider: (Angel - Love You Guys)
From: [personal profile] stormerider
Thank you, All the feels. I logically knew all this, but hearing someone else say it... yeah, it really does help.

*offers hugs*

Date: 2013-08-23 02:25 pm (UTC)
bkwyrm: (Default)
From: [personal profile] bkwyrm
A very timely post for me. A friend of many years is going through a crisis and is looking for support. Normally, I'd be able to be be there for him. At the moment, I'm working through 28 years of repressed emotion triggered by my dad's death in May, seeing a therapist twice a week.
I've told my friend that I have to step back from supporting him through his very emotionally draining and complicated situation (consistently made worse by his own choices). I have told him in person, by email, and by text message. His response has been to continue to push me, in various ways, to support him. Most recently, he sent me a book via Amazon that related directly to his own situation, with the hope that I would read it so that he'd have someone to bounce ideas off while he's working through his crisis.
For 25 years, I've known this guy. I stood up for him at his wedding. And this may end the friendship, because he just can't seem to get it through his head that emotionally, I am too busy dealing with my own shit to deal with his too. The fact that he keeps trying to slide it onto my plate in various ways despite my telling him I can't handle it and don't want it makes me want to slap him for being so self-centered. When someone tells you they have too much on their plate,respectful friends don't look for ways to put their issues on your plate too. Sigh.
Anyway, thank you for the post, I think it's very useful.

Date: 2013-09-05 10:33 pm (UTC)
alitalf: Skiing in the 3 Valleys, France, 2008 (Default)
From: [personal profile] alitalf
It seems to me that my friends are mostly understanding of the limitations caused by what I am told is "CFS" - even if it doesn't fully make sense to them all. I don't find it makes total sense to me, but facts are normally quite intractable.

I am sad to be partly losing touch with many people due to my own lack of ability to interact as much as in days of yore, but that is probably unavoidable, and I have to accept it whether or not I am happy for it to be so.

The thing I can't yet figure out the answer to is work related. I work as a freelance electronics designer, and I am getting away lightly with CFS in that I can usually do a days work over a 24 hour period, specially because I work in my home office and don't commute. I am the main earner. Stopping earning a living is not a viable option in the foreseeable future, even if I wanted to. I don't - the work I do is interesting and keeps me mentally agile (but tired!).

It seems to me necessary not to tell customers of any health limitations unless it is absolutely unavoidable, lest they look for someone else who doesn't have these limitations. If I must soon, for example, visit the manufacturing plant in China to teach them how to test one of the things I have designed, it may be impossible to disguise the limitations. I think I may be on course for a situation I absolutely can't deal with even slightly.

Have you any ideas how to approach this less destructively than might otherwise be the case?

Date: 2013-09-07 09:38 pm (UTC)
alitalf: (CookWithWine)
From: [personal profile] alitalf
It was a long shot, and I'd not wish you to feel bad just because you don't know an answer to something which may not actually *have* an answer.

Although I have to be fairly bright to design electronic equipment for a living, I often find that other people have insights that I miss, so I frequently ask for advice or second opinions on things. You have written things which appear to me to be insightful, so it seemed to me that if there was a possible solution that I have failed to see, you had a better chance than most to find it.

BTW if you like Nightwish, who I like greatly, there may be a chance you'd also enjoy Epica? Maybe you'd even like Iron Maiden, come to that?

Date: 2013-09-10 09:25 pm (UTC)
alitalf: Skiing in the 3 Valleys, France, 2008 (Default)
From: [personal profile] alitalf
I had been wondering about searching for some Kamelot on Youtube, so now I will.

Nightwish seem to think that Kamelot are quite good enough to headline, when they play support for Nightwish.

Date: 2013-09-26 09:57 pm (UTC)
alitalf: Skiing in the 3 Valleys, France, 2008 (Default)
From: [personal profile] alitalf
I have had only a couple of chances to listen, and not quite making sense of it yet. Normally, I find that I need to listen to several tracks, often several times, before I can figure out whether I am going to really like something, or if it won't work for me. I think I need to sort of build up a picture of it in my mind. So far veering in the positive direction, but not sure.

When the rush is over..!

Shall we friend? I don't post a great deal, but what made me think of this is I am currently writing a long request for advice (which I will LJ-CUT for length so as not to spam people).

Date: 2013-09-09 11:37 am (UTC)
sqbr: Hannelore: Worry hat! Bravery plus 10, charisma plus 5 (worry hat)
From: [personal profile] sqbr
Hi, I was linked this post and it's fantastic, it really spoke to my experience s someone with both mental and physical disabilities.

Date: 2013-08-23 03:31 am (UTC)
From: [identity profile] lisbeth slabotsky clark (from livejournal.com)
Thank you, Sweetie. That was brilliant. May I share it?

Date: 2013-08-23 03:34 am (UTC)
From: [identity profile] naamah-darling.livejournal.com
Spread the love! (Thanks for reminding me to tell people that's okay!)

Date: 2013-08-23 03:37 am (UTC)
From: [identity profile] lady-fox.livejournal.com
I am cross posting this. I am fucking lucky in not having chronic illness, but many of my close friends do, and I think this is something that everyone needs to hear... If I hadn't seen things like this, heard the spoon theory, had friends who were willing and able to inform me of these things, I would be far more of an unintentional asshole.

Thank you.

*hugs*

Date: 2013-08-23 03:56 am (UTC)
From: [identity profile] rowangolightly.livejournal.com
"When you are explicit about boundaries of any kind, some people take it poorly, and think that you are faking, or are being lazy. They may be offended that you aren't prioritizing them over other things, or will assume that you are only looking for pity or are complaining just to complain, or are wallowing in it. (That last one is extra special.)"

GODS, yes! I lost some friends after my divorce/move/move into the new house because a bunch of my formerly close friends thought they knew what was better for me than *I* did and were so pissed off that I didn't take their advice, when obviously they knew what was better for me than I did. *eyeroll*
I lost more when I didn't get over my divorce on the time table they though I should. Then even more simply when I objected to being told what to do by people who are not in my situation so how could they know (i.e. never having been divorced or an entrepreneur) what works for me? One gal in particular literally turned against me and is a nasty and negative and gossipy as can be, STILL after 3 year. I don't know exactly what I did to piss on her wheaties but I wish she'd get over it and move on.

And I don't even have a huge health problem or disability, "just" PTSD from the divorce, the legal bull-shit and the friend abuse. And then there's the Dyscalculia when so many people think is made up or that I'm using as an excuse. NO, I'm not. I've learned how to deal with it and am talking about it for two reasons, 1) because it does explain why I'm forgetful and sometimes dingy and seem really uneven in my concentration, and 2) because SO many other people have it without realizing it and so often when I do talk about it, someone will perk their ears and go, "what? tell me about this, that sounds like me!"

Sorry to rant, but you wrote excellently and touched a couple of chords with me.

Date: 2013-08-23 03:58 am (UTC)
ashbet: (Held)
From: [personal profile] ashbet
You are amazing, and I <3 you so hard for this.

I'm in a pretty good place about (kind of) accepting my limitations -- or at least accepting that my limitations are going to force me to modify my activities, and with setting boundaries with the people I know and love . . . but, yeah, I'm in the place of being able to speak clearly about my limitations and boundaries, but not yet at a place where I'm 100% *okay* with having those limitations (and I may never be. And that's okay, as long as I can articulate them -- whether *I'm* at peace with them is a different battle.)

But I'm sharing the HELL out of this, because I wish me-of-ten-years-ago had this advice, or me-of-not-knowing-how-to-tell-friends-that-I-can't-stand-and-walk-normally-anymore, or even me-of-trying-to-yet-again-explain-How-Doctors-Work-to-My-Fucking-Mother . . . because it's exhausting and demoralizing to have to not only articulate your limitations, but to set flaming tiger-traps all around them, because you're under such CONSTANT attack that you're faking/lying/not trying hard enough/lazy and trying to get out of obligations/only need more fresh air and exercise/Just Have The Death Fat, etc.

I am grateful that my friends and my loved ones, my family-of-choice, are good about respecting me when I say that I can't do something. It's been a process, and it's been sometimes hard on me or hard on them (I'm my own most ruthless detractor, but there have been times when my limitations have slammed up hard against someone else's, and Josh says it's both hilarious and horrible to watch Kira and I occasionally engage in the exhausted/brain-fogged equivalent of a kitty-slap-fight when she and I are each trying to convince the other that, no, *I* can't do that thing, *you* need to do that thing, but we're each convinced that we're the worse-off of the two at that particular given moment, and therefore should be exempt from doing that thing.)

That's two chronically-ill people trying to work together, though (and, OMG, when poor Josh had the untreated whiplash, the three of us were basically hobbling along and barely managing to hold it together, because when you have two sick and/or broken people and one normally-able-bodied one, and you break the able-bodied one, it's a MESS.) But we made it -- and that's in part because we each got better at articulating our limitations, setting down our boundaries . . . and being willing to make ourselves vulnerable by ADMITTING to limitations in the first place, which each of us are bad at in our own way.

But, yes -- we're doing pretty well, all things considered, although I'm still coming to terms with this back injury and the fact that I'm either getting a spinal fusion or living with this level of pain/disability-from-this-injury indefinitely, because it's not going to *heal* (and spinal fusions are really problematic in this area -- they tend to cascade, because the levels above and below fail, so you wind up bolted-together up and down your spine), because it's really severely limiting and awful . . .

. . . but I'm sharing it because I want everyone who ISN'T as good at articulating this stuff, or isn't in the same place of acceptance, or isn't surrounded by people in their day-to-day life who are respectful of their boundaries, and and and, to get to see it, because it's fucking brilliant.

Much love, sugar. And MUCH respect.

-- A (tired, rambly, a bit brain-fogged and hurty, but very, seriously impressed by this) <3

Date: 2013-08-23 05:38 am (UTC)
From: [identity profile] rowangolightly.livejournal.com
"When you are explicit about boundaries of any kind, some people take it poorly, and think that you are faking, or are being lazy. They may be offended that you aren't prioritizing them over other things, or will assume that you are only looking for pity or are complaining just to complain, or are wallowing in it. (That last one is extra special.)"

GODS, yes! I lost some friends after my divorce/move/move into the new house because a bunch of my formerly close friends thought they knew what was better for me than *I* did and were so pissed off that I didn't take their advice, when obviously they knew what was better for me than I did. *eyeroll*
I lost more when I didn't get over my divorce on the time table they though I should. Then even more simply when I objected to being told what to do by people who are not in my situation so how could they know (i.e. never having been divorced or an entrepreneur) what works for me? One gal in particular literally turned against me and is a nasty and negative and gossipy as can be, STILL after 3 year. I don't know exactly what I did to piss on her wheaties but I wish she'd get over it and move on.

And I don't even have a huge health problem or disability, "just" PTSD from the divorce, the legal bull-shit and the friend abuse. And then there's the Dyscalculia when so many people think is made up or that I'm using as an excuse. NO, I'm not. I've learned how to deal with it and am talking about it for two reasons, 1) because it does explain why I'm forgetful and sometimes dingy and seem really uneven in my concentration, and 2) because SO many other people have it without realizing it and so often when I do talk about it, someone will perk their ears and go, "what? tell me about this, that sounds like me!"

Sorry to rant, but you wrote excellently and touched a couple of chords with me.

Date: 2013-08-23 12:07 pm (UTC)
From: [identity profile] flameelf.livejournal.com
Similar but different (disorder) issue:

Do you find, however, that there are certain people or certain situations where you HAVE been very clear about your limitations, but they seem to think/presume they know better than you do and they keep pushing you beyond that limit?

I ask, because I run into this with both my asthma and my joints/knees/hips (where, similar to the "spoon" analogy, there are only so many "spoons" I can walk or be up on my feet in a given day, etc.). People seem to think that I "just need more fresh air" when I've already expressed that my lungs are compromised and I need to call it a day. I've had others deliberately park much further away from an entrance than they needed to (with virtually dozens and dozens of empty parking spaces between the door and where they DO choose to park) with the idea I "just need to WALK more" in order to somehow "fix" my joints.

I get so frustrated with this, because I'm being TOTALLY CLEAR that I can only do "this much" and cannot do "that additional", and I'm STILL having these issues with people.

The one 'helpful friend' who insists on parking so far away from anywhere we're going has bent my last nerve.

Grey :?

Date: 2013-08-23 07:45 pm (UTC)
From: [identity profile] naamah-darling.livejournal.com
OMFG. Uuuuuuuuuuuugh. UGH. Hate that. Hate it. I'd be really friggin' annoyed with that person, too. Not cool.

I don't have that problem now, because I've either cut all those people out of my life completely, or I refuse to get any closer to them once I see what kind of person they are, so they don't wind up as friends. I'm LUCKY, in that I can actually control who I am around . . . an out of the home job, or interactions with people outside the home on any consistent level beyond dealing with register people at stores, is not something I have to deal with and that cuts down on general assholery considerably.

SOMETIMES the good people in my life forget themselves, or they get SO HOPEFUL that this time it will be different, they might push a little. It's not ill-meant, nor ill-taken, since it's not a consistent thing, but I try to never let it become A Thing.

Date: 2013-08-23 07:49 pm (UTC)
From: (Anonymous)
Ha! I have people doing that exact same "parking thing"! What is UP with that? I have Lupus with Heart Involvement adn Fibromyalgia! I'm in pain, Sun and Heat are banned and my heart races up over 200 bpm with exercise! My DOCTOR recommended parking close so that I can withstand being in the store where I can shop and have enjoyment - when telling someone this, the STILL part a million miles away (they don't drop me off at the front, THEN park a million miles away in some weird effort to save their car from dings- just park far away). So, by the time I trek through the horrible, hot parking lot, I have lost my energy to shop!
Some people have zero logic, even when you lay the logic out FOR them!
I am guilty of smiling through it now after I have stated all the facts - I will not participate in the argument. Try to keep a positive attitude while my brain is telling me how inconsiderate people are. I try to stop myself and name off all of the good, positive things about the person!

Date: 2013-08-23 07:59 pm (UTC)
From: [identity profile] naamah-darling.livejournal.com
Rrrrrgh! Rageface! Good lord, that's mannerless and rude! What even the hell?!

I try to stop myself and name off all of the good, positive things about the person!

As long as you aren't trying to balance out "is a jerk about making me walk twenty miles to the store when they could just let me out in front" with "makes decent deviled eggs, appreciates the same crappy '80s music I do, and is usually up for Karaoke." Some things aren't worth it, and we're culturally conditioned to just suck it up. Most people should be more forgiving, true. Because I came from a background where I was not allowed to HAVE certain kinds of boundaries or be angry about being mistreated, I've learned not to trust my own urge to forgive. It's usually related to the urge to avoid conflict, not the urge to actually make my peace with something someone has done to piss me off.

Date: 2013-08-23 08:00 pm (UTC)
ashbet: (Sedusa)
From: [personal profile] ashbet
I would have some strong words with that "helpful friend," honestly.

"Are you trying to make me sicker? If I do this extra walking, I will be in pain and having trouble breathing. It means that I enjoy this day, and your company, a heck of a lot less.

I would like you to please either drop me off in front if you feel the need to park so far away for some reason, or I am going to have to limit the times that I go out with you, because I need to take care of my health."


My mother pulls that shit, and -- yeah. She is also angry that I use a wheelchair part of the time. She can't STAND that I'm in it. She thinks I'm "giving up" and "letting my body fall apart" -- no, my body is doing that on its own, thanks, but the wheelchair slows the progression, and allows me to have some degree of independence and normalcy.

Your "helpful friend" is being a jerk, and needs to get called on it.

**hugs and good luck**

-- A <3

Date: 2013-08-23 12:27 pm (UTC)
From: [identity profile] terriaminute.livejournal.com
I posted this with a quote on G+ because the people who have circled me there seem to really respond to things I respond to. LJ really needs something like a "like" or "plus" button, because sometimes all you can do is say YES and boost.

I am hard-of-seeing, so to speak, a package deal with albinism, as well as "allergic" to the sun because zero melanin (the only human pigment, what darker skin or a tan is made of). Unlike some people with albinism, my parents knew what I had from birth, so they knew what to do for me. I didn't ever try to "get a tan" and I never went without glasses (although they cannot correct much). I grew up requesting a front seat in classrooms with permission to walk up to the blackboard to read what the teacher wrote (hard for a shy kid, but necessary). So, yeah. Grok the well-defined boundaries and the communicating needs.

It's been my experience that asking a stranger to read part of a wall menu I can't get close enough to makes them feel helpful, which makes them feel good about themselves. Really, most people want to be helpful. They just need to know how.

Date: 2013-08-23 03:23 pm (UTC)
From: [identity profile] runningnekkid.livejournal.com
Oh man I couldn't share this fast enough. It's hard to let people own it themselves and be wrong if they need to be and still own my...I don't even know. Dignity? But it really does get easier with practice.

Date: 2013-08-23 06:00 pm (UTC)
From: [identity profile] amandajayne98.livejournal.com
I don't know the easiest way to share this with you.

http://atalantapendrag.tumblr.com/post/59114165441/mineralists-so-i-found-out-skullis-makes-dragon

Have you seen these!!??

Date: 2013-08-23 07:55 pm (UTC)
From: [identity profile] innostrantsa.livejournal.com
Incredibly timely, and not just for friendships, either! Thank you for posting this.

Date: 2013-08-24 04:20 am (UTC)
From: [identity profile] brightlotusmoon.livejournal.com
I love you. And love you more. And yes.

Date: 2013-08-25 02:05 am (UTC)
From: [identity profile] hollowdoll.livejournal.com
Thank you so, so, so, so, SO much for writing this. This is something I struggle with immensely, particularly at work ("Guys, I need to sit down & eat something now. No, now now. Not in five minutes when we're less busy; I've put it off enough, and if I don't get something now, you're going to need to call an ambulance. No, I can't just eat a cracker and call it good for awhile like you can. I'm well aware we're busy, but this needs to happen immediately," repeat forever) or hanging out with my boyfriend's friends (none of them have any issues with disabilities, so I am totally new territory for them and they just don't get it). I beat myself up constantly because I'm always the "party-pooper". And people just don't get it despite my best efforts.

I will definitely circle this around. Thanks for giving your permission to do so; the world needs to see this. Badly.

Date: 2013-08-25 04:42 pm (UTC)
From: [identity profile] drumlogic.livejournal.com
Wow! You are stinking awesome at laying things out and explaining them simply and thoroughly! I'm Super impressed at this talent!

Date: 2013-09-02 04:24 am (UTC)
From: [identity profile] cissa.livejournal.com
Thank you for this. So much.

Date: 2013-09-08 09:42 am (UTC)
shehasathree: (Default)
From: [personal profile] shehasathree
Thank-you for writing and sharing this!

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