Advocating while shy

A lot of the time (when I have energy/spoons/etc) I can be a pretty outgoing person; I'm chatty and engaged. But in key ways, I'm very shy: I hate speaking in foreign languages, even when I'm semi- or completely fluent in them, I hate ordering food at restaurants when I have to make special requests, I hate asking people for help or directions. But most of all, I hate putting my foot down and saying "No, I can't do this."

That's a pretty bad trait for someone with a disability, since PWDs need to advocate for themselves fare more than do able-bodied people. Often, when I'm with Boychik and something has to get done, like groceries and neither one of us can really do it (he's working, for instance, or tired, and I'm fatigued or in pain), sooner or later I hiss through my teeth, get up, and do it. Of course, there's hell to pay for it later, but it gets the job done at the time, and that's all that really seems to matter at the time.

But it's even worse with people who don't know. At this point, my disability is still invisible, and with great effort I can hide it. It takes a fair amount to push me to the point where I literally cannot move. I can do most things people do, but at a far higher cost.

If I go on two shopping trips in one day, particularly if one of them is a walkabout, I will be painfully fatigued by the end of the day. I can't run up and down from my loft because it's painful and exhausting. And if I don't tell someone that, they don't know and I'm stuck wearing myself out because I've deceived them with inappropriate expectations of my ability level.

At this point, given the very mild level of activity I've performed and the toll even that's taken on me, I don't know if I can do the things that the very active summer I planned when I was better requires. It's Day 3 of Simcha's Excellent Adventure, and I want to go home to Boychik, curl up, cry, and not move until August. If this is not nasty jet lag (and does jet lag come with hip pain?) I am desperately screwed.

My aunt is, all told, rather active: she goes to the gym, shops on foot, and walks her three giant dogs several times a day. And she is very happy to see me and wants me to do everything with her and gets quite disappointed when I beg off. But can I really go to the gym? Walk the dogs 4-6 times a day? In the strictest sense, "Can I make my body physically go through the motions?" maybe. Day after day, probably not. And it has pretty nasty consequences: doing so, even for one day, puts me in a terribly bad mood, impatient, fatigued, and near the verge of tears constantly. In the sense that actually gives a shit about my quality of life, the level of activity I'm attempting is absurd.

But as a woman, I feel socialized not to bother people, to please people by pushing myself beyond my abilities, and not to say that I can't do these things, especially when there are emotional consequences (like my aunt singing "Lonely! I'm so lonely!" every time she passes the window when she goes out with the dogs when I've refused). Boychik, with his male privilege, can say "No!" and tell me to do likewise, but it's taken very differently when he says it as opposed to when I say it, to the extent that I'm very, very reluctant to do so.

So why can't I just say "I'm disabled, I'm tired, please just let me rest for a while"? Mostly because I don't have the good sense to advocate for myself. At a certain point, disability has consequences, and either that's the consequence that I don't or can't do things or that I kill myself trying to do them. And I'm so scared of the disappointment, the passive-aggressive sighing, or the stupid questions that just go on and on and on (because of course you have a right to know about my body and everything that goes on with it, especially if you're family), that I prefer just not to say anything, and lie about it even when that doesn't work and I'm broken and exhausted. Better for them to think I'm lazy than, gasp, disabled.

This is part of the serious intersectional issues of disability and gender. While socialized females are told not to inconvenience others, disability is, in fact, and inconvenience, and it has to inconvenience someone. And there's only a degree to which you can, in fact, suck it up and deal with it. With fatigue-related issues, however, that's pretty much what you're told to do.

And you know what, guys? Jet lag makes that soooooo much worse.