If you're living with a chronic illness, you're in the right place.

Tuesday, December 10, 2013

Chronic Illness Catch-22

One of my favorite books I read in college was Joseph Heller's Catch 22, a satire about World War II pilots who find themselves in a really challenging situation, whose title has made it into the English vernacular.  To find oneself in a "Catch 22" is to be in a no-win situation, a double bind, you're-damned-if-you-do-you're-damned-if-you-don't if you will.

I was meeting with a client recently and the topic of normal test results came up.  What do normal test results mean to people living with a chronic illness?  They should be good news, right?  We talked about how she didn't feel just happy or relieved, but was also kind of angry about it.  To the person not in these shoes, being angry about normal test results seems really counter-intuitive.

There was this split in her emotional reaction:  I'm happy but I'm irritated.  Part of her wanted the results to be off, just a little.

Even though that would be bad news in terms of her disease, and she would likely not be dancing in the streets with joy, abnormal test results would lend some legitimacy to her ongoing symptoms.  We talked about this at length and how you can be simultaneously thrilled and pissed off about numbers on a sheet of paper.

Scene from the best movie on.the.planet.
I reflected on my own experience with Crohn's disease the past 11 years, now.  I've come to expect normal test results most of the time, even if I'm feeling pretty punky.  Even during the height of my disease where I was in the bathroom 20 times a day, my c-reactive protein (CRP, a commonly used blood test for inflammation) came back just under the cutoff for normal.  WHAT?!  I feel like I got hit by a mack truck and probably broke my toilet, yet my tests are NORMAL?  My favorite experience was when I underwent a test for vitamin B12 absorption.  I was severely deficient in B12 on a blood test, but the absorption test came back completely normal.  No, you're cool when it comes to absorbing B12.  Not sure why it's dangerously low, though.  My Crohn's is located in the terminal ileum, where B12 is absorbed - so my reaction was "duh?"

My brain was full of you know what.
Rather than being relieved, I was upset and frustrated.  Okay, let's be honest: it really drove me insane and I lost a lot of faith in medicine.

With this Chronic Illness Catch 22 also comes reactions from others.  You've been feeling pretty lousy and are in a lot of pain the past few weeks but your entire blood panel comes back normal.  How do you explain that to your friends and family members?  Will they be less understanding because the numbers don't jive with the symptoms?  It's entirely possible.  Doubt creeps in, not only in their minds but in our own.  What's going on if I look good on paper?  Why don't I feel better?  In these reactions our illness experience can lose legitimacy.

One of the best things my former gastroenterologist told me was that he never bases his clinical decisions solely on test results.  They're not always accurate (hence my B12 experience) and it would be wrong to disregard the patient's self-report over numbers from the lab.  Don't get me wrong, he wasn't implying fundamental flaws in our laboratory testing and that they shouldn't be trusted.  Rather, they're not the whole story.  Subsequently I became less obsessed with these tests and normal results, and changed the way I thought about them.  It was good news that my CRP wasn't through the roof, but it didn't mean I wasn't sick or my symptoms weren't legitimate.

So, my friends, this is what I call the chronic illness catch 22.  We want to be well, we want our tests to come back clean.  But sometimes good news doesn't feel so good.  If you're feeling this way, stop and think about why.  Are you stuck in the Catch 22?

Dr. T