Diagnosis Isn't Everything

The Mayo Clinic recently released the results of a study, suggesting that women have a 3.6% lifetime risk of developing rheumatoid arthritis and a 0.9% risk of developing lupus (http://www.eurekalert.org/pub_releases/2011-01/mc-mcd010511.php).

This reminds me while I’m not alone in this fight, I am unique.

The lifetime risk for breast cancer for women is 12.2% or about 1 in 8, although this risk is very small for my current age bracket (http://www.cancer.gov/cancertopics/factsheet/Detection/probability-breast-cancer).

In other words, we are being told virtually nothing about these other illnesses, and billions of dollars a year go to causes that most women think about, at least to some extent. So really, we are harboring silent killers. I thought arthritis was only a disease of old people, and I don’t recall ever really hearing of lupus until I was diagnosed with it. This really frustrates me. And this should not be the way things are. This, after all, is America.

On the other hand, with a lifetime risk of just 0.9%, shouldn’t I feel an obligation to question the diagnosis?

Recently, someone (not a medical professional) asked me:

Is it really lupus?

And I was forced to wonder:

Am I still supposed to be asking this question?

Because with this question comes others that I think are equally unproductive.

Did I cause this?

Maybe I did. Maybe my flu shot caused it. Or loving Splenda. Or drinking diet soda on occasion. Or eating fat free everything in undergrad because I was worried about the “freshman fifteen.”

If we all lived life like this, examining our every move under a microscope, we would all be miserable, fairly unproductive people.

I keep telling myself that I want to stop dwelling on the past and asking unproductive questions.

What if I had done this differently? What if I hadn’t dated this or that guy? What if I had indulged more or drank less soda?

The problem is that illnesses are complicated, and no one thing could have caused, or prevented, my illnesses. Just as there are a constellation of symptoms, there are a constellation of causes. To think that I can ever really figure out this puzzle is ludicrous. It’s nonsensical. So why bother trying?

Because healthy people say and do things that lead me to believe that I should have all the answers.

I’m sick of the self-blame. Of the feeling of inadequacy I feel for not being like my healthy counterparts. I still struggle with trying to balance other people’s opinions with the fact that grad school is not my top priority. Being as healthy as possible is. But healthy twenty- and thirty-something’s don’t get that.

I’ve been thinking back to what it took for me to get to where I am today. I am also working on a paper that I hope to submit for publication that looks at my illness experience over and against, and in relief of, the broader medical sociology literature. This has led me into an extended foray into my medical records, and has reminded me of how muddled the diagnostic process was.

Celiac’s disease. Systemic yeast infection.

Those are just a few of the illnesses that were in the running when I was in the process of trying to obtain an accurate diagnosis. And there were many, many more.

I can only imagine that those who have contested illnesses, or those that have illnesses that cannot be identified via medical testing, feel differently about diagnosis. I know that in many ways I am lucky that there is a label to put on me.

But diagnosis isn’t everything.

I was convinced that my life would be better as long as I had a diagnosis. But it turns out that, that isn’t always the case. I have lupus and rheumatoid arthritis, but I also have a constellation of other symptoms that don’t necessarily fit my diagnosis perfectly. I have illnesses that are hard enough to explain to myself, let alone other people.

A diagnosis provides some comfort sometimes, but it doesn’t do much for the reality that I am chronically ill with two incurable diseases and all that comes with them. A diagnosis provides an outline of medications, although some may work, and some may not.

I thought that a diagnosis would solve my problems, but it doesn’t. Sometimes I wish I didn’t know. Sometimes ignorance is bliss.