Monday, January 19, 2009

An (Un)Happy Anniversary

“I hope you know, I hope you know
That this has nothing to do with you
It’s personal, myself and I
We’ve got some straightenin’ out to do […]
The path that I’m walking
I must go alone
I must take the baby steps ‘til I’m full grown, full grown”

- Fergie, “Big Girls Don’t Cry”

Ten days ago marked the 0ne-year “anniversary” of my “seeing” Doctor C. It’s pretty funny that this is my longest relationship with a member of the opposite sex. How sad is that?

(I’ve tried to keep my doctors gender neutral, but I’m sure many of you have figured it out already)

In some ways, I feel like my reliance on Doctor C, over the summer, for instance, was because of my own insecurities. I guess I wasn’t so much worried about being able to take care of myself, but rather, I was worried that I couldn’t, and wasn’t, managing my lupus and RA symptoms.

In retrospect, I think that being cut loose was in some ways liberating because it forced me to take control of the things that I could be in control of and wasn’t, and resigned myself to the fact that there are and were some things that I just simply don’t, and maybe never will, have control over.

Since my appointment in November, it has been my longest stint of feeling well most of the time, and the longest I’ve gone without seeing a doctor, since all of this started. It’s nice to (finally) have tangible proof that I am making strides, no matter how slowly or awkwardly.

It’s funny, though, in an ironic kind of way, to think back to my life a year ago. Before then, I never knew it was possible to extract 27 vials of blood from a 90-something pound person. I never really knew what lupus was, or that rheumatoid arthritis wasn’t the kind reserved only for older people. I didn’t know that one day the body could be fine and the next it could be going crazy.

I’ve come to think of it something like this:

My body was like a train speeding down the track. Suddenly, the track forks. There are two ways to go. A simple decision, right? Not when you can’t see what the other side of the fork holds. So one way leads to a smooth track so the train can keep speeding along. The other leads to a track that is broken, an unfinished track that leads the train off a cliff. And what switch does my body pick to flip?

I keep thinking a lot about forgiveness, too. I’ve come to realize that Doctor C really does have my best interest at heart. And although the diagnosis giver, he is not responsible for the diagnosis. But there is, then, the lingering question of who is. And for some reason, I can’t seem to forgive myself. I can’t get off the fact that maybe there is something I could have done to prevent all of this from happening…

I think back to my job writing for a newspaper the summers before my junior and senior years of undergrad. I worked at least 80 hours a week because I didn’t know any differently and didn’t think to care that maybe such a work ethic was causing permanent damage to my body. And a pretty nasty habit that I gained from college was not eating when I was stressed. Most people who have stress related eating issues binge when they’re feeling overwhelmed. I stopped eating. Most people worry about gaining weight their freshman year (“the freshman 15”). I lost ten pounds that I really didn’t have to lose. So I have to wonder if any or all of these things contributed to my current health status? I probably will never know for sure.

In some ways, this whole lupus thing makes sense. But in other ways, I still shake my head when uttering the words. How is this really happening? There is definitely still a part of me that wonders what might have been without having lupus and rheumatoid arthritis in my life. But even as the thought crosses my mind, it is overshadowed by the fact that I will never know the answer to that, because I will never know a time when I don’t have these illnesses in my life.

So, as I reflect on this moment, I also try to stick to my New Years resolution and not ruminate too much about the past. I’d like to think that both good and bad have come from being chronically ill.

It’s strange because I left my last appointment with Doctor C incredibly frustrated and angry. But since then, I’ve started feeling a lot better. Is that a sign? What does that mean? I’ve talked often about considering seeking out a new rheumatologist. But as many of you know, I’m sort of a creature of habit who doesn’t deal well with change. So at the moment, I have no immediate plans to switch doctors.

The truth is, I had written Doctor C off a long time ago. And I shouldn’t have. Because the reality is that while Doctor C was doing the best job that could be done, I was the one who was unrealistic about things. It’s crazy to think that you can be healthy one minute and then the next you are never able to feel that way again. Maybe the real truth, though, is that both Doctor C and I had unrealistic expectations. It’s hard for anyone, especially someone to has spent their life with the goal of helping and healing, to see health go out the window, especially for a young person.

As I’ve talked about before, the doctor-patient relationship is a hierarchical one, but it doesn’t have to be. Just as our doctors need to put themselves in our positions, we also need to put ourselves in their positions. And when you look at things from that perspective, you come to realize that chronic illness isn’t easy for anyone involved. I think both Doctor C and I were misinformed in our thinking that things would be perfect. Things are fine, much better than last year at this time, but there are still (and probably will always be) issues that have to be dealt with.

So here’s to you Doctor C, and many more years together (maybe).


  1. Leslie,

    Don't ever let yourself believe that you did something that "caused" your illness, whether it was working long hours or not eating properly, because frankly there are people who do those things their whole lives and NEVER get sick. The truth about all these illnesses is that no one really knows what causes them. Of course now that you are sick you should do all the things you can to help support your body (not working crazy hours, eating well, etc. . .), but that's because you know that taking control of your health is ultimately your responsibility. That doesn't mean you caused this, just that you want to do what you can to make it better, more bearable.

    I totally agree with what you've said about chronic illness being tough on patient and doctor. I remind myself of this constantly. I have had a lot of awful doctors, but I have had some great ones too, and not only can't they make it all better (which is a frustration for both parties) but they are forced to see unreasonable amounts of patients each day, and let's face it, we take up more time than the "average" patient. That puts a strain on the doctor, as well as on us. It is good to be able to step outside of our own shoes and realize the other side of things at times. It doesn't make things all better, but it helps you to understand how the other person may be feeling, and ultimately to develop a better relationship from which you can work together.

  2. You are clearly a person of great depths. Thank you for taking us along with you.

    I don't think it's right or necessary to blame yourself for your illness. We don't tend to give ourselves credit for our beauty and wit, do we? they just happened. so does illness. It's what we do with it all that signals who we are.

  3. Maureen and Barbara, thank you for your comments. Sometimes it's easy to fall back on my old ways of self-blame. But it's nice to have people in my life who are there to remind me that "it's not my fault."

  4. As always, your words echo what so many feel. I couldn't agree more with Maureen about self blame. Maybe the woman who is raped shouldn't be walking outside at dusk? But then again, lots of other people do, so SHOULD she really have known better? Please don't fall into the blame the "victim" mentality because you need your strength. The illnesses you live with cannot be prevented -- that's why they're chronic illnesses! --and they can hardly be managed well we know so little. This is about baby steps but it's also about having patience so you can notice the changes you're experiencing. And you are. Good job!