Friday, August 1, 2008

What Happens When We (I) Get Used To This?

Another thing that stuck out to me from Laurie Edwards’ book, “Life Disrupted” (full post on the book coming soon), and I wanted to write about further, was the idea of getting used to chronic illness.

I think, at least for me, as someone who is still in the early stages of this journey, it is a pretty scary thought to think of lupus and rheumatoid arthritis as a forever-kind-of-thing.

On the one hand, it’s hard to imagine ever getting used to this. On the other, I can already see it happening.

Like for instance, take the itching attacks and lack of appetite. For all intents and purposes, I should have e-mailed Doctor C about these issues weeks ago. But I didn’t. I pretended like they were nothing, even tried to self-medicate, but when none of my attempts worked, I finally caved.

There’s always the issue, the balancing act… It’s probably nothing, but it could be something…

People say that your life flashes before your eyes right before you die. I think many of us with chronic illnesses experience this long before we ever take our last breath.

For me, it was the 27 vials, waiting to be filled with my blood after my first rheumatologist appointment. It wasn’t my entire life, exactly, that flashed, but rather, a decision about the importance and viability of my life.

At that moment, the girl who heretofore hated shots and needles of any kind could have put a kibosh on the whole thing.

I could have said I was done right then and there.

But I didn’t. And now 2 vials of blood is nothing, and 6 or 7 are a good day at the doctor. I’ve become completely desensitized and removed from the experience. I guess you could say I’ve gotten used to it.

In some ways, that’s a good thing. I’m almost 23. I shouldn’t hyperventilate over a flu shot. On the other hand, it’s kind of sickening.

The pill bottles that line the counter and my daily/weekly pill organizer that hangs from the wall are constant reminders. Now every part of everyday (morning, noon, evening, and bed) is occupied by a pill to swallow, along with the hope that lupus and rheumatoid arthritis symptoms will abate and the side-effects of the medication won’t be more than I can handle.
I’m not complaining. I’m just making an observation.

I’ve become a regular on the hospital buses; some drivers even know where I live because if they are at the end of their shift, they offer to drop me off, around the corner from the last stop.

That’s the other thing, I’ve learned, er, I’m learning to accept help from people.

And just when I get used to the rhythm of my life with illness, I start to feel better. And then it’s a whole new set of issues to get used to.


  1. I just started a blog and I am trying to connect with others who share chronic illness. I am 25, living with chronic pain from adhesion related disorder and am trying to make the best of it. My blog starts out with my story, but will eventually get into how living with a chronic problem involves so very much. Please visit my blog and let me know what you think.

  2. Getting used to needles and having to learn to accept help are ways of coping with life. It's an unfortunate (or at least sometimes unfortunate) side-effect of being ill, and it's one that isn't listed on any medication. Maybe it should be.

    Nevertheless, the help does make things easier; as long as it's welcome. :) People who 'help' without asking are annoying though.

  3. You mentioned being itchy and loss of appetite.. did your doctors say what that was from? I am currently experiencing the same thing though my doctors just think my loss of appetite is just nothing or i'm "depressed" which i'm not.

  4. I think part of getting used to being chronically ill is a necessary form of coping. If we continually are shocked by not feeling well in the morning, or dealing with a flare, then it makes it harder to cope. So some of it seems to be necessity.

    But, it's depressing to realize you're getting used to being sick, and everything that comes along with it. When I went for my first Botox treatment - something that should be somewhat terrifying since, oh jeez, they're injecting in my face - I was fine. Anxious, but not freaking out. After 3 months of acupuncture, with needles in increasingly painful and weird places, Botox injections were almost easy. Your description of blood draws and vials reminds me of that.

    Be well,