Tuesday, June 10, 2008

What I Want People To Understand

I want people to understand that every aspect of my life is work.

Every move I make takes calculating.

If I do everything on my list today, I will pay tomorrow, or maybe even before tomorrow.

If I put some things off, I will have more energy today.

This is the constant calculation that runs through my head.

I’ve learned that at least for right now, cleaning and working out cannot take place in the same day. These two activities cause me to expend far too much energy. Grocery shopping has to be left on its own. So does walking up and down four flights of stairs three times to do my laundry. There are other activities as well…

Working out is something that might have to be taken off the list altogether. I mean, I walk everywhere, anyway. And while this would present its own set of issues, it may be something I have to consider doing, or rather not doing, for a while. At least as long as I’m putting in 40 hours a week at my job.

Once you have crossed the threshold into illness, there is no turning back.

It gets in there and it messes with your DNA. It flips a switch and causes an unstoppable chain reaction, a collision of body and illness that you never see coming.

And this can happen anytime, anywhere. A lot of us will say that we just woke up one morning and “felt different.” But the truth is, most of us can think back to signs weeks, months, and years earlier, when we thought something might not be “quite” right. But in the absence of any other signs, there was always a cover, always something it could be attributed to. Something that made it make sense.

It’s not just the pain of my disease that I seek understanding about. It is also the frustration that I feel. But no one who hasn’t had over 20 doctors appointments in the last eight months (not counting routine dentist, eye exam, etc. – if those can even be considered routine anymore), four major tests/procedures performed, and a host of blood work, can begin to understand the frustration that ensues when trying to keep life seemingly normal falls apart.

Making other people understand means having them accept who we are, illnesses and all. It means occasionally cutting us some slack, which for some reason, people are, as of late, finding it incredibly hard to do.

To clarify, this post comes in response to three things:
1. I am being pushed at work to take a class. And I’m seriously worried about it. I don’t know how else to explain it to the people involved, so I’ve resigned myself to quiet resignation. I’ve talked about this before. The class is one week long. It would be during work hours, but there is homework involved. This means that I would actually have to make some use of myself during the hours after work, when I usually make a half-hearted attempt to eat dinner and then spend the rest of the night on the couch – because I’m too exhausted to do anything else.
2. My next appointment with my rheumatologist was rescheduled. And this doesn’t mean that I had any say in the new appointment time. This means that I received a letter in the mail today telling me that my appointment had been cancelled and rescheduled and it informed me of the new date and time. Well the thing is, I will be in school, I will be teaching, and I don’t know all of the specifics of that schedule yet. I will have the part of my life that I want to worry about, to worry about. But because it takes so long to get these appointments in the first place, I think I am just going to have to sit back and deal with whatever “chaos” ensues. But I wonder if having no regard for my time is supposed to make me feel more like a person and less like a numbered patient. If so, not the way to go!
3. The general lack of understanding that seems to be a continuing theme in my life.


  1. Hi Leslie,
    I just wanted to say hello and let you know that you definitely aren't alone. I am young too, 26, and have a chronic illness (chronic pain as a result of a dog mauling which ended in TMJ total joint replacements). It is hard for people to understand just how difficult it can be to do normal, every day things... my Dad once said to me that "we all have to do things we don't want to do sometimes.." insinuating that I was just being lazy. That isn't it AT ALL! It just takes so much more effort and sometimes, we just CAN'T do something because our pain is out of control. Anyway, I write a blog about TMJ disorder and chronic pain/illness... I will add you to my blog roll. My blog is http://www.tmjfriends.com/blog

    Nice to meet you! Hang in there.

  2. Hi Leslie, I'm also a young chronic illness sufferer. I'm 24, and suffer from severe chronic migraines - I've had this current one since November. I understand all too well about the frustration you're talking about.

    I invite you to come check out my blog. I'll surely be back here to visit - it's nice to know I'm not alone in being young and chronically ill. Not that I would wish this gig on anyone, but at least we can connect and share our experiences.

    Be well,