A rambling post because if anybody would understand...

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I try to deal with Facebook for an Ehlers-Danlos syndrome (EDS) page—believe me the irony of someone like me dealing with social media isn't lost. I keep getting called condescending, that exact word. Today, because I wasn't able to discern a desire for emotional support from the post, "I think this would make a perfect EDS shirt" linked to an image of a man in a prisoner uniform on a zebra. (Zebras are often used for obscure diseases because of a medical school saying, "If you hear hoofbeats, think horses, not zebras.")

I said "It bothers me. I am not a prisoner of EDS—'my body is a cage, but my mind holds the key'." I didn't get into detail, I didn't think it was necessary. But I got yelled at in her response: I made her feel like crap by making her feel her opinion didn't matter (I'm not sure what in my simple response communicated that), and didn't I understand that people came to the page for support. Actually people come to the page for a variety of reasons—accurate information, sources for assistance. I'm frequently called condescending because I try not to let inaccurate information pass; we're a foundation dedicated to awareness, and the awareness needs to be inaccurate, there are enough misconceptions.

I don't understand what in "I think this would make a perfect EDS shirt" should have clued me in to a desire for personal emotional support. I could have seen it as such if she had said, "This shirt is the way I feel." But no matter how I tried to point out the miscommunication, and that maybe I, too, was entitled my own opinion that the shirt was *not* a perfect EDS shirt, at least for me...I continued to get yelled at. Including some vulgar language.

I don't know how else I could have reacted. I'm overthinking this, aren't I? I'm just puzzled. I don't know how to not appear condescending in these instances when I'm called that.

(Part of what bothered me about the T-shirt I didn't get into: it was a black-skinned man in a prison uniform on a zebra. I had enough sense not to say that to her in public.)

Sorry for rambling. I thought y'all might understand my confusion.

I have no idea how one could deduce a need for emotional support from such a post.

And, in many online communities (forums, etc) I have seen people make comments like yours in posts that are clearly intended to get emotional support, and not get responses like that unless the community has rules against that kind of post (and some do).

Thank you. Sometimes I just get lost in what a "normal" reaction would be. I don't censor anybody but myself on the page, because I know most of us with EDS are in pain, but it gets confusing some days.

Yep, very much so.

You over estimate the amount of thought that goes into facebook by about a million-fold.

A 'normal' reaction on facebook would be if you don't like it, ignore it or report it; there isn't much point in getting into debates except for the fun of it. A normal 'reply' is to just press the like button...

I am the spouse of someone with Aspergers. Let me just say that my first impression is that the person attacking you was out of order from my NT's point of view. My spouse thought what you said was inspiring. It made sense. It had wisdom. No need to second-guess yourself on this one.

I think she is rather hypersensitive for some reason that is beyond your control, in other words, the problem with this exchange lies in her, not you.

Often people with chronic illnesses will become so entangled in their illness that they cannot seperate themselves from it. When you said that you dont feel tht way, and that your mind holds the key...you were seen as threat to her world of thinking about herself as she probably feels depersonalized by her illness.

My mom has a chronic illness and she used to have this weird habit of once meeting somone, she would practically give them her whole medical history as if mastocytosis was the only way she could introduce herself...in essense it was all who she thought she was. So one day I brought it up that I wished she would not do that because she is so much more than masto. Well then she went off like a rocket with guilt trips and screaming on and on about how she has lived with it so long and that it effected her so profoundly was else is she supposed to think of herself.

She is usually a calm level headed person.

Anyway, I hope that explains the psychology behind her reaction...which has everything to do with her, nothing to do with you.

As far as the "perfect shirt" goes, unless you are a person with an rare illness or a doctor....such symbolism would be lost on the general public...just my art college training coming out there.

I do tend to overthink everything, because I still on't grasp the concept of why overthinking is bad, and with Facebook that's a problem for somebody at least once a week. It was a "Blade Runner" moment—I go along passing as a typical human until I fail somebody's compassion test and stand accused of being an android.

I've always agreed the zebra is a bad PR image. It works just great internally among the community who generally think it should be our graphic identity to the world. But what good is a symbol if you have to waste space explaining it each time you use it, space you could use to explain the disease no one knows about?

Thank you.