Tuesday, January 18, 2011

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.


  1. For like 10ish years, I had no idea what was wrong with me. All I wanted was a diagnosis, which I got time after time, but knew that those were wrong eventually as things never improved. When I finally got the correct diagnosis, Lyme Disease, I was happy until it became like a kick in the stomach. Some doctors telling me it was all in my head, with others telling me it was baaad and I needed treatment a-sap.

    Lately, I have been doubting myself...I googled chiari malformation, and every symptom fits me. It is scary.

    Life shouldn't be like this. I agree sometimes, it would be nice to be ignorant once in a while.

  2. I'm torn when it comes to diagnosis. For years, it was "atypical" this or "chronic" that, but no "label" that made me fit into a particular category. I often wished I had a label: to feel I was part of a community, especially once I started blogging, facebooking, etc.

    Late this summer, my pcp decided to treat my constellation of symptoms as fibromyalgia, and referred me to a rheumy who specializes in fibro to see what he thought.

    I've seen him twice, and he seems convinced that I do, indeed, have fibromyalgia along with other issues that may or may not be interrelated.

    Now I have a medication label; the mystery of why and when (I've had some of these symptoms for years, so when did I actually "get" fibromyalgia. I don't think of myself as my "disease" now that I have a diagnosis, it just means when I hang out in chronic pain, chronically ill, or fibro groups, chat rooms, communities, face book pages, I feel more like I can participate because now I am officially a member of the club.

  3. I think, too, that having a diagnosis can help ease the pain of conversations with others that may not have to deal with chronic illness. Perhaps it's just an "easy was out," but it can make the conversation much less stressful to be able to say I have X, Y, and Z... rather than fumbling around to try to explain what's going on with you. I know diagnosis isn't everything, but there is some relief in having a label or at least a category... Doctors have a higher likelihood of being able to help you deal with an identified illness, than an unidentified set of symptoms.

  4. I agree that a diagnosis isn't everything. I've been on a quest for 3 years to figure out a diagnosis for inflammation that no doctor has yet to name and no test has yet to show a conclusive answer. I've found that finding helpful, caring doctors and those around us with similarities has helped the most in getting through the chronic pain. And it's nice to see someone else out there with similar questions. I look forward to reading more of your posts.



  5. Thanks for writing about this! I am going through LOTS of tests right now and have been only diagnosed w/ undifferentiated connective tissue disorder. So it is VERY frustrating to me that I'm not in a particular category. Now, my disease is changing, so they are testing for more. I am looking forward to an answer in hopes they will be able to help me better and also so others will take me more seriously. After 6 years of feeling like hell, it seems like it would be nice to give it a name. On the other hand, there may be some bad things with that too.

    So all in all, you made me feel better about where I'm at. But I am still hopeful for an answer. Interesting perspective.

  6. Intellectually, I know you're absolutely right -- a diagnosis is often just a label; it's not a cure, or even necessarily a treatment protocol.

    Shakespeare may have been right that a rose by any other name would smell as sweet, but having a name, a label, a diagnosis, would help me (I think) have an answer when people ask what's wrong with me. I'm coming up on the fourth anniversary of when I got sick to the point that it took over my life, and I sometimes feel like people think I'm a hypochondriac because I don't have a definitive diagnosis. Most people have never heard of people being sick for years at a time without at least having a name for it. Of course, not all names/diagnoses get the same respect, as anyone with fibromyalgia, chronic fatigue syndrome or things like that can attest. But even people who have heard of diseases like Lupus will say things like, "Oh, I have a friend/relative/co-worker with lupus and s/he is just fine and it's no big deal." Really? Maybe for them, but not universally. Or maybe they just hide it well.

    I suspect that even though I have such deep diagnosis envy for folks who were able to figure out what was wrong with them in a definitive way, that, like you say, once I get my "real" diagnosis, I'll have to come to terms with the fact that simply knowing its name(s) won't heal me. And that's kind of depressing ...

    As always, Leslie, you make me think. Thank you for sharing your experiences with all of us, and being so thought provoking!