Tuesday, October 7, 2008

Under The Guise of Control…What Will I Become?

I’m having a difficult time emotion-wise this week for a few reasons:

1) Hormones – need I say more?
2) Struggling to keep up with work and school commitments, etc.
3) The weather
4) Being forced to face the truth about my life

As I’ve said before, this semester seems to be forcing me into a corner, forcing me to stay there until I admit the reasons for crawling there in the first place.

We all have questions that we ask ourselves, some we share with others and some we don’t. And I think one thing about discussing illness with others is that it makes it “real.” It puts it out there for people to “see.” It is no longer something that is hidden from view. It becomes something that people actually have to acknowledge.

And the whole idea makes me more than a little squeamish.

And I don’t mean making a self-deprecating joke about being a 23-year old in the body of an 80-year old. I mean the way you would if there was a self-help group for the chronically ill like there is for alcoholics.

“Hi, I’m Leslie. And I have lupus and rheumatoid arthritis.”

One thing this does is it makes peoples reactions real, as well. If people treat you poorly or unfairly, it isn’t because you’re ill if they don’t know that you are. And yet often we resent or hold people responsible for their lack of knowledge. Like somehow, by osmosis, they are supposed to get it. So if we do tell people and they react in many of the awful ways that many of us experience, there is no excuse for those actions.

I guess what I’m trying to say is that I feel a lot of people are misunderstanding me lately and I’m not quite sure how to get them to understand without just coming right out and telling them what’s going on. And even still, that doesn’t always lead to understanding.

I think that people see me as being particularly stressed or busy and don’t understand why I feel that way. It’s difficult trying to balance health and everything and still remain on a level playing field with everyone else.

You know, I want to say that I lived the best years of my life despite my illness.

And it seems silly to think of vanity at times like this. But the truth is, a big part of me thinks that if only I can literally “keep up appearances,” somehow I can really be ahead of the curve. Maybe I’ve just been watching too many shows about plastic surgeons and perfect bodies. Or maybe it’s something else. Something deeper taking hold of me.

I feel like before, I had the typical body issues. I’m too short, not thin enough, etc. But now the fact is, those things don’t matter. I’m stuck in a body that for some mysterious reason has decided to go crazy on me for no particular reason. I find myself in a body I despise and for all intents and purposes, my body despises me as well. And what little control I thought I had is left to pick up the pieces of this mess. And I wonder what becomes of someone who is stuck in a body that won’t cooperate. There are things I want to do, but can’t. There are things I want to understand about all this, but I can’t.

It makes me think of the song, “Why Can’t We Be Friends?” And I feel like I’m constantly asking my body the same question.

I think there is a feeling that I want to look in the mirror and not see a stranger. I see someone going through the motions, but not really taking stock or getting enjoyment from things. I keep thinking, one of these days, I’m going to post a really happy, uplifting post. And then something happens and I sit down to write and what spills out of me isn’t really happy at all. It’s the hard truth, but it’s not necessarily a happy one.

I hope that one day I will be okay with not having control of my life.


  1. I have a year jump on you, facing all these issues (I got dx with MS in April 07). I could have written this post. I keep waiting for time (medicine, therapy, love...) to make things easier but it hasn't happened yet. It is hard, and I want to get credit for living it. Even so, I don't want to have to tell people, either.

    I would give anything if there were a 12-step group for the chronically ill (us youngins, especially)! =)

  2. Hi EJ,
    I couldn't agree more. I expect things to get easier, and they don't. And I would like to get a little credit, too, and I don't. It's funny you mention a 12-step program. I wrote a post about that in July:
    Not sure if you read it, but thought you might find it interesting. Thanks for reading!

  3. I keep waiting, too, to get some control over my life, but it hasn't happened yet! I give you tons of credit for everything you do!