Chronic Illness, Uncategorized, Writing

Chronic illness and the endless search for “why”

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I’m having a slump day. A “flare up” day. A feeling-crappy day.

It started yesterday, really. I was in denial at first, but it’s here for real now. It’s not the worst flare-up I’ve had, but it’s definitely the worst I’ve felt in the past week or two. I’m having symptoms I haven’t had in over a month, and it’s rather deflating.


As usual, my primary complaint is not necessarily that I feel physically crummy.

What makes me feel so awful is that I don’t know exactly why I feel crummy on this particular day. 

This sets me off on a crusade for information. I demand to know WHY!

Did I do too much yesterday? The day before?

Have I been getting overheated?

Was it the food I ate?

Are my regular hormonal fluctuations making my symptoms flare up?

Is my treatment plan actually working? Should I change something?

What? What is it?!

So, I try to find an answer to the “why” and the “what.” If you have a problem, then find a solution or stop worrying about it, right? I’ve always been an inquisitive person, and I’m usually quite intent on researching things in order to better understand them.

So begins the Googling. The forums. The medical journals. Anything.

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I’m probably not the only person who does this, but I’m also not a person who searches for answers any time I have a health issue. A cold? Ha! I’ll ride it out. Weird lights in my vision? Wait a week or two. Nausea? It’ll pass soon, I’m sure.

When chronic illness flare-ups strike, however, I want to know why—and for good reason. The catch? When you have a chronic and/or mysterious illness, like me, searching for answers is complicated, extremely frustrating, and often futile.

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Every now and then, I come across something in my searching that is actually helpful. In fact, that’s how I’ve found a few beneficial treatments. It’s an occasional reinforcement of a habit: I wouldn’t engage in so much fretting and searching if I didn’t occasionally get something promising out of it.

The question is: how much of this searching and wondering and attempting to “fix” things is useful?

Probably not much.

Why have I come to that conclusion?

Well, a few reasons:

  1. Things may change.These flare-ups come and go, and vary in their duration. Why spend hours trying to figure out “what did it this time” when you could hunker down, treat yourself well, wait a few hours or days, and see how things go? Then you can reassess if you need to.
  2. There are better things to do for your mind and body at this time. Okay, I didn’t dredge up any medical studies to support this one. But, I’d bet that “hours of internet research” is not high on any lists of things that improve your well-being when you are sick.
  3. If you are on a treatment plan, you need to give it time. Flare-ups may still happen when we’re on a treatment plan. In fact, they often do. If you’re on a treatment plan that you are hoping will help you recover or improve in the future, the road may still be a bit rocky. Having patience is difficult in this situation, but important.
  4. Sometimes your chronic illness isn’t to blame. I’ve had numerous moments of despair when I thought my CFS was getting worse, when in fact I was coming down with a cold or had something else going on. Sometimes it’s hard to discern which symptoms are caused by CFS, and which ones are something else entirely. Uncertainty sucks, but we do need to be at peace with it sometimes.

Luckily, there are a lot of great resources and tips out there for handling flare-ups when they do happen.

Is it likely that I’ll stop searching for answers entirely? No. I think that becoming more informed and searching for solutions can be useful.

But, when it comes to flare-ups, I’ll try to focus more on the present-moment solution: self-care.

Looking for info on how to deal with flare-ups of your chronic illness?

Here are two of my favorite resources:

Flare! and the Flare-Up Toolbox

Minimizing Relapses and Dealing with Flare-ups

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