Thursday, March 18, 2010

“Despite Lupus”

I had taken a break from reading books about lupus or rheumatoid arthritis or chronic illness, mainly, I think, because I have really been entrenched in illness for the past few months. Things have been quite up and down for me, and experiencing lupus flares after months without them has taken both a physical and emotional toll.

“Despite Lupus” has seriously been sitting on my shelf for probably close to a year. But I just haven’t been feeling it…until now…

Sara Gorman’s story sounds like so many young women with lupus, including my own. We’re at the top of our game, never stop kind of people…and boom…lupus changes all that. And for most of us, we were fairly healthy until we weren’t anymore. Although luckily for Sara, diagnosis came quickly after her first symptoms began to show. Mine went unheeded for years.

I think one of the main lessons of this book is a simple one. When it comes to lupus and the challenges that come with it, you have to be real with yourself. As Sara talked about all of the things she can no longer do or has had to accommodate, I’m struck by the thought that lately, more and more often, without even asking, someone is helping me put my coat on. I can get one arm in, but can’t maneuver the other enough to get the other arm in. It’s frustrating. It’s discouraging. It makes me feel like I’m 80 years old. Bras have become a chore for me, too. I’m finding that if I can maneuver my arms enough to swing it on, I’m partial to front closures (sorry if that’s TMI).

But who would have ever thought that at 24 years old, I’d be so concerned, not whether articles of clothing are fashionable, but whether I can get them on myself? I certainly never did.

Sara is the ultimate cheerleader. As I read the book, I imagined running, and having Sara running alongside of me, coaching me on, telling me I could do it. And I haven’t run in years. I also haven’t set foot in a gym since an acquaintance of mine contracted MRSA from the gym a few years ago. “Despite Lupus” makes me want to take back the things that lupus has taken away from me. Of course, there are things that I’ll never be able to get back. But there are others that I could have if only it weren’t for the fear that is standing in my way.

I buy purses based on whether I’ll be able to carry them both in my hand and on my shoulder. Silverware, plates, and cups all get a similar test (minus the shoulder part). So do books. Are they easy to hold? Will my hands and wrists hurt after only a few minutes of holding them?

I no longer wear my hair straight, because of the time and effort it takes to dry and straighten it, unless I’m having it done at a salon. Otherwise, I’ve come to wear it wavy/curly – which is actually what it is naturally – because it hurts my arms too much to style it.

There are many times over the last few years that I’ve wanted to go for a run. I was never a big runner to begin with, but it seems that as soon as I could no longer do it, I wanted to. Go figure!

I wish that I could have Sara on one shoulder, competing with my devilish side of me that seems determined to make many of the mistakes Sara warns against.

Sara talks about lack of control. I, too, cried when told I was being admitted to the hospital. It was the first time that lupus hit hard and I was unable to hit back. There was nothing I could do. It had, simply put, gotten the better of me.

The point of all of this is that “Despite Lupus” has made me look at ways my life has changed because of lupus. It also makes me realize that in some ways, lupus, while making life decidedly more complicated, takes me back to the basics of things. Sara encourages readers to measure life’s moments in new ways, ways that used to seem small and insignificant, but are now so precious and important.

“[…] my future of living well would be my greatest success yet to come” (181).

Yet again, I find myself deciding whether to do the lupus and arthritis walks. My feeling is that as long as I am able to walk and well enough to do them, I should. I couldn’t even touch them the year I got diagnosed. But I did both last year and think it may be a good tradition to start, especially because there are people who are willing to do them with me.

My illness outlook has certainly changed since I was first diagnosed. The year that I was sick and trying get diagnosed, I tried to keep things as normal as possible. I pushed myself way too far, and it was certainly at the expense of my health. I had planned to wage war. When lupus hit, I would hit back harder, being stubborn and headstrong. Not letting the disease get the better of me. But I’ve learned as of late to stop fighting, because it’s not a fair fight. It’s not a fight that I am going to win.

So I have to make difficult choices. I was asked recently if lupus has changed my plans for the future. How could it not? I always thought I wanted to work at a Level One Research university. But I’ve realized that in order for me to be competitive in that kind of environment, I won’t be able to be as healthy as I possibly can be. I do realize now how lucky it was that I really became sick after starting graduate school. While it made my first few years of grad school impossibly difficult, had I gotten sick before, I probably never would have committed myself to a five plus year PhD program.

So I am doing what I can, despite lupus!

(Gorman, Sara. Despite Lupus. Four Legged Press, 2009.)


  1. I am going to check "Despite Lupus" out. Have you read "Unexpessed Blessings" by Roxanne Black. It is a good read too about Roxanne's struggle with lupus and her advocacy work connecting others struggling with a variety of conditions.

  2. Hi!
    I love your blog! So sorry you are suffering from RA & Lupus! I live with RA & Fibromyalgia and I just started my blog. It's so nice to meet others this way! Check out my blog:
    Thanks! Maria

  3. I have read "Unexpected Blessings" and wrote about it here:

  4. Hi Leslie,

    I just found your blog and am going through it backwards – that is, from the earliest posts to the later ones and I just read your post about your T cells committing suicide and it made me laugh out loud! Thanks for that! I look forward to reading more and to seeing your updates.

    Cheers, Laurie

  5. Your post really hit home with me today. Thanks for sharing!

  6. I so know where you are coming from, and it does get better. I didn't think I'd be able to put my bra on by myself anymore either, and here I am 3 years later and able to do it! hang in there. Lupus likes to pick on us every where, and each body part gets a turn, and then maybe gets another turn. it's ok, though. Just keep hangin' on honey.