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.|
|My brain was full of you know what.|
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?