The ten stupidest questions I am asked too frequently:
10. Don’t you bet bored?
On realizing that I spend most of my day in one room of the house in front of my computer. Answer: Nope. I wish I could point to the computer and go com-pu-ter. It does things, you know? It plays music. You can watch films and TV. Play computer games. Write stuff. Read stuff. Talk to people. You know? Who gets bored when they have a computer and broadband?
9. What do you do all day?
Answer: -sigh- Com-pu-ter. Now I really want to point and say: What do you think all this stuff around me is for? Decoration? I know it’s all black and chrome, but really. Those are speakers, that’s a headset, on the floor somewhere is a keyboard, the little black thing with blue lights is a game pad and yes the other little thing with blue lights is a mouse. Cool huh? And when I say “computer, wake up”, I’m not talking to you, am I.
8. Do you need help with that?
Answer: If I need help, I’ll be sure to ask. I understand that this is a tough one. Sometimes I need help and sometimes I don’t. Some things I can do some of the time, some things all of the time and some things never. It takes a while to know which is which and I don’t expect a complete stranger to get it. Asking politely is fine. Really. However, I do have a set routine. I’ve had the same people in half a dozen times or more now. I said on the first day that I can’t open the shower door. Ever. And every morning we sit there until I say ‘can you open the door for me?’ or looking at it expectantly as it seems rude to interrupt the chatty temp, and they’re all chatty, which elicits this question. YES. I need help. Every time. I cannot open the door. Ever. Please do it for me. Damnit. Just stop talking and open the fucking door.
7. What happened?
Answer: -blank stare- I used to feel compelled to answer a question if asked, however impolite it may seem to have asked it. I no longer feel any compunction whatsoever. If I don’t want to answer a question, I don’t. It’s none of anybody’s business why I have crutches or a wheelchair or braces or bruises or cuts and scrapes or scars. I do and just because I don’t hide it from view does not mean it’s open day with the intrusive questions. I’m allowed to wear a tanktop in the summer ’cause its hot without it somehow implying that it’s acceptable to ask me about what you see. It’s polite not to ask and even better yet, polite not to gawk.
6. How old are you?
Answer: -shrug- Unless I’m buying alcohol and you feel the need to card me, what does that matter? I’m an adult, that’s all you need to know. My age has nothing to do with anything and telling me how young I am and how horrible my life will get when I’m older is not an acceptable topic of conversation. It’s the kind of avenue that makes me want to say ‘well, I have vascular complications so I’m not bargaining on making it to 55, nevermind 70, so don’t worry about it.’
5. How long have you been like this?
Answer: What do you mean when you say ‘like this’? Answering a question with a question usually leaves my question unanswered as well as theirs. Put a little bite into it and the response is ‘Sorry, I didn’t mean to offend you’. Right. Sure. Whatever. EDS is a genetic condition. If someone asks because they want to get to know me better, the answer is usually more polite. And more detailed. I started dislocating joints when I was maybe five. Breathing problems started when I was 3. The headaches when I was 8, maybe 9. The fainting when I was 13. I was diagnosed when I was 19. I stopped trying to work when I was in my mid-twenties. Got the wheelchair in my late twenties. How long have I been like this? Pretty much my whole life. Being unable to do something have nothing to do with diagnoses or aids. I don’t remember my joints not slipping. I’ve always tired easily, always lived with the thought of not being able to breathe hanging over my head. I remember times of not being able to do stuff at all, times of doing stuff that nearly killed me to try and times of just giving up on trying and letting the pieces fall where it may. The balancing act has always been there. How much will it hurt? How many times can I put a joint back in and keep going until it won’t go back in anymore? How much air do I really truly need? How far can I push it, how low can my blood pressure drop before the dizzy fog turns to black nothingness? It’s a complicated question that few people get to ask and yet everybody always asks.
4. What’s it called?
Answer: Ehlers-Danlos Syndrome. E-D-S. I know, I know. Not an unreasonable question. But an annoying one. It never stops there. It’s not that I can say diabetes or arthritis or cancer and people nod and move on. It’s a rare condition that just had to have a long weird name. As a result, it never ends here. It the question that leads to the next question which leads to the next: What’s that then? What’s collagen? Does genetic mean it’s inherited? What’s connective tissue? Who else in your family has it? Who did you get it from? Will you want kids? Argh!
3. What was that clicking/crunching noise?
Answer: That was my [insert name of joint] dislocating. I wish people wouldn’t ask if they don’t really want to know. Or maybe they ask because they want me to be reassuring and say ‘it’s nothing’, but nothing doesn’t make that kind of a sound. It’s not nothing. Dislocating a joint is easier for me than for most, but it’s so not nothing and I won’t play it down. Not any more. Live with it. That’s what it sounds and looks like when bones don’t stay put. Deal already.
2. Do you tire easily?
Answer: Yes. Longer unspoken answer: Think about it. I have a genetic condition that affects every part of my body. I’m in constant severe pain. I get weird headaches. I have a heart conditions. I have crappy lungs. I need to stop and rest after walking five steps and nap in the afternoon because going up and down the stairs once was exhausting. Yes, I tired easily. My muscles don’t work well, my ligaments are weak, my bones migrate and nothing gets as much oxygen as it should. Of course I get tired. Nothing works as it should. Wouldn’t you be exhausted?
1. Does it hurt?
Polite answer: Yes. I can’t begin to explain how much it hurts. It hurts so much all of the time that I don’t even try to explain. I can’t take most of the pain meds out there and so it hurts even more than it reasonably should. Migraine headaches hurt, fainting and hitting my head hurts, dislocating joints multiple times a day hurts. Just lying in bed not even moving hurts and when I move it hurts some more. Yes, it hurts. All the time. Every-where. I would think that it was obvious.