@Aminorjourney For non-disabled people, I've had some luck using language like, "I'm too disabled to come out today". They don't seem to know what to do about that but they at least grasp that it's involuntary.

Truly tho, I have ended up spending way more time with friends who are also sick and disabled. That easy understanding about access is so important.

@Aminorjourney honestly, it's something I'm coming up against as I becoming more disabled later in life. Chronic gout, IBS, and a spinal injury, combine for some complex problems that people can't see (beyond a limp).

I had a friend just not get it. Kept saying "when you get better", just didn't understand the effort to get to his house and home, so I just stopped putting effort in.

I'm not a bitter person, but I don't have any desire to explain the intricacies of my disabilities to anyone

@Aminorjourney I don't get into specific diagnoses but I will say something like, I've got blood pressure issues so I have to climb hills slowly and if I get dizzy it's not a big deal it just means I need to sit down and have a snack

I had a buddy at my old job who was a hemophiliac, and he basically did the same thing when he was going into the field with new people and also told them where in his pack he had the extra clotting stuff in case he got hurt

@Aminorjourney I’m late-diagnosed ADHD, and have lots of little subsets of that.

One characteristic of my diagnosis, is that I overshare. (“Over” being relative only to societal expectations, but that’s another discussion.) So I just flat out tell folks that my brain and body work differently than most people.

The straight-forward transparency seems to work well for me. I don’t know if that’s helpful or not.

@Aminorjourney
Thats tough to hear. Sorry you're experiencing these things.

I struggle with this since I've learned about my own limitations much later in life and am still learning and testing them myself.

For example, I tell people: I often know things but I might view them differently or struggle to make them make sense to you.

That doesnt mean I dont want to understand you. I just think different. I dont really have close friends anymore due to this because most cant bear this.

@Aminorjourney My wife had a stroke a couple months ago. We were SUPER LUCKY in that she has no major physical impact, some exec function and occasional confusion which will take up to year to heal.

Her physical stamina, and mental stamina have limits in the outside world. She has taken to using a cane when there might be crowds, even though she doesn't really physically need it as much.

It does help advertise to people around her, "hey, I'm not 100%, give me a little space". It works. 1/2

@Aminorjourney It might just be because most of my people are engineers, but I’ll say something like “I have engine trouble. It’s a power thing. So if I’m not functioning correctly I either need fuel or rest, sometimes both.” I find it works really well.

I’m not giving too much detail and there’s a little humor there to help them be chill about it.

For turning down invites, “Brain says yes, body says no. If I treat body really nicely maybe it will cooperate next time.”

@Aminorjourney

I send people the link to this page a lot:

https://en.wikipedia.org/wiki/Spoon_theory

What is more annoying for me, is the fact that i used to be able to do a lot of things that i cannot now do.

My disability only started post-surgery 12 years ago.

It's why I describe this situation in terms of getting older, as the long-term wear'n'tear is where a large part of mysituation is coming from.

"Don't want to become disabled? Don't get old."

@Aminorjourney you are not alone in this, and I absolutely feel the struggle. My social circle has definitely shrunk throughout the years, but I'd say that my tolerance for people who get very annoyed at plans changing, or even slow replies, is rather low at this point. I understand other people may need more stability and more daily contact but, if that's the case, I'm just not their person and that's Ok. I don't have the energy to deal with those type of relationships anymore.

As for people close to me who still may not quite get it, I've tried to just share a list of symptoms with them. Like, look, this is disorder A, and the common symptoms are A1, A2, A3, ... and that's how it is. It is a chronic lifelong disorder that has no cure, and the symptoms ebb and flow so not every day is the same. Some days I'm knocked out, some days I feel better, and I just have to see how it goes. If it helps them, I may also share some links from official healthcare sites, so that they can also see what it all is. But that's only for people who are already close to me and I know want to understand.

@Aminorjourney

In terms of hidden disability, I go through cycles of disclosure and antidisclosure and both have brutal consequences. Currently in a cycle of antidisclosure which means that I have to be colder and more distant, creating an artificial persona around 'if you don't respect my hard boundaries of no, I will not interact with you outside of what is necessary for function'. Obviously this has major trust implications for both parties, is terrtible for report, and sometimes just doesn't work, if mutual function relies on some disclosure.

I know I need to get back on the disclosure cycle but like you alude to getting people to understand is basically impossible. I find that people tend to use this information against me, as they will technically accommodate my boundaries, but then skirt them by writing me off and disparaging me (othering me) in other ways in an effort to remove me. I'm resigned to the paradox of disclosure. I can't get most doctors to take me seriously, so how can I expect the public to? For the most part I've just lowered my expectations for others. My general response is to state my limitations baldly and blankly without offering explanation and leave no room for interpretation, but again this results in my having a cold, distant demeanor with related consequences.

Of course I imagine the best solution could be to find other people with hidden disabilities but that has its own problems; how to find something that is hidden; disabilities are so diverse and mine is unlike many others; just because we have disability in common doesn't mean we have anything else in common; internalized ablism; etc. In the end, i'm trying to learn to be comfortable being alone and sharp in my boundaries without attempting to explain myself (both personally and professionally) while also trying to not let that embitter me and remaining open to connection when the opportunity arises.

#InvisibleDisability #Disability

@Aminorjourney
Many people likely to need additional information already know I am Autistic.
My usual explanation for turning down an invite is "Sorry, Autistic and no spoons left for that. However, have a great time."

If they don't already know me well enough it is unlikely I will accept an invitation anyway, and will simply say that I can't make it.
However, when an explanation is needed I will tell them that I am Autistic and the event/experience/meeting is more than I can cope with.

Those who don't get it are usually happy to not have me, but those who do get it will offer alternative options to see if that helps me, and which I can still turn down without issues.

If there is a lot of pressure to meet their expectations I tend to throw that back at them and say "...and that is why I am saying 'No' now.".

Occasionally I chicken out and say, "Sorry, I have a headache and need to sleep it off.".

@Aminorjourney

hey yourself. on a tangential issue, speaking about anything without pissing people off is nearly impossible when you are in pain. ableism interprets painful inflection as anger. keeping conversations short helps, but the world is hair-trigger anymore thus pissing people off comes with either immediate consequences or eventually, a wellness-camp cure :(

thanks for being here, disabled.social!

@Aminorjourney

I'm finding more and more that I do not have the patience to do all of the emotional labor for more able-bodied people to understand what is happening with me at any given time.

My best tool in my arsenal now is, "No, thank you." Yet it has taken me decades to be able to say only that without over-explaining or oversharing what is going on. I tend to apologize too often for things I don't need to apologize for, especially things that make me stand out from the crowd.

Strangely, the pandemic has given me an out. I continue consistently to mask, avoid crowds, etc., so now people have gotten used to me declining invitations and not doing things that don't suit my specific requirements for my own respiratory safety.

I have a few friends who will meet me all the way there (they will mask, they will meet up one-on-one or in smaller groups/quieter settings, they'll do activities with me outside, they'll go to restaurants and sit outside with me, etc.); those are true friends. I don't owe explanations to anyone else for any reason.

Having been a people pleaser and a chameleon my entire life, this is new ground for me. It's uncomfortable, but I'm not willing to deplete my spoons and risk my life and my health to conform to other people's foolish expectations of how to be in the world.

Sure, I miss out on stuff, but that's mostly because I'm no longer on Facebook lol 🙄

@Aminorjourney - my issue is more mental fatigue than physical (my neurodivergence, and especially the C-PTSD, mean that I'm always on-alert and using a lot of spoons just to exist "normally" in public and to mask effectively), but because that's not always easy/safe to explain, I tend to really dumb it down and simplify it for a lot of audiences (I will tell safe audiences lots of detail, but for work and such it's an issue at times).

I try to present it as "this is the accommodation I need, but I'm not going to call it an accommodation or flag that it's because of a disability, I'm just going to state it as a fact that this is needed, and maybe offer a vague/hyperbolic description of what happens if that isn't honoured".

"I just need more rest than the average person; if I don't get my 12 hour changeovers between shifts I'm useless"

"Oh, no, trust me, you don't want to see what happens if I don't get a proper lunch break; I'm a monster without food"

"Yeah I can't take double-shifts; my brain will explode if I do"

"I mean, good for you if you want to work 80 hours a week, but I'd like to live to see fifty, not die of a heart attack right on the floor here"

"Oh my tiny hobbit-body absolutely can't handle missing the morning break time; my people need second-breakfasts or bad things happen"

And then I absolutely do not budge. It's not up for discussion, it's not something I'm going into detail about, it doesn't matter if they argue.

"What do you mean you can't?"

"I can't".

"Other people do it"

"I'm not other people"

Etc, ad nauseum.

Because if it's up for discussion, then they'll think they can negotiate with you. They'll want you to "compromise". They'll think you need to meet them halfway, even if halfway isn't going to be a proper accommodation for you.

And if it's "I need this because of [disability] reason", then their bigotry enters the conversation.

But if you're just firm? Hard for them to fight, and doesn't give anything concrete for their bigotry to latch to.