Tuesday, August 28, 2012

I Know It, and Yet Clearly I Don't

I sit at the long table, coffee cup in one hand, pen in the other. My bag is by my tapping feet. Occasionally I lean forward to jot an important point down. I love how smoothly the ink runs out. It makes my handwriting look nicer than it actually is.

I listen to the staff and to the students. They talk about accessibility and being your own advocate and communicating with professors.

I listen and nod and silently think that I know this stuff. I know how to be assertive. I've been doing it for the past four years.

I know how to talk to professors; I should, I've grown up with one.

I know there are things to learn. There will always be things to learn.

The only piece that strikes a cord with me is when one student talks about stigma and bringing up your disability with peers.

And then another student talks about educating people about what your disability is. Making sure they understand.

This is all I can think about. The making people understand. It feels like a huge weight has just appeared and set up camp squarely on my shoulders.

Because yes, I've been doing this for a while. I know I need to be up front with people and not pretend like it's going to magically go away now that I'm at college.

It's thinking about the people who don't believe me that scares me.

I can handle educating people. Most people need it, because they have no idea what half the words I'm spewing out mean.

What I don't handle is people not believing me. Whether they think I'm making it up, or that it's all in my head, or that I don't look sick, so therefore I'm not.

No amount of explaining complex medical terms can truly educate someone as to what it is like to live with this. To live in my body.

I'm scared that if I don't address it with people, they'll think I'm just reclusive and sleep a lot.

And that if I do address it, they won't understand, even after I've done my best to explain.

That my illness (I don't personally consider it a disability, but that's something else entirely) will come between me and other people.

I've dealt with these questions before; again, none of this is really new.

But it's not like I know it all, because I did somehow assume, or at least forget, that I will have to deal with this.

I am meeting a huge number of new people, who, once I start to spend time with, will notice something is different. Then I have to have the not overly comfortable talk. And hope that they not only believe me, but see past it. Add my illness to the end of a long list of things they know about me. And then keep on adding to that list.

1 comment:

Anonymous said...

You know, I bet the people you'll really want to get close to will want to understand all you have to share. If they don't get it then that tells you something about them, doesn't it? Your high school friends who meant so much to you got it and saw beyond it. Remember that.