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.
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.
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.