The Mighty Logo

The Battle With Listening to Your Body as a Person With Chronic Illness

The most helpful emails in health
Browse our free newsletters

You come in with a list of nondescript symptoms, they point you toward anxiety.

You come in with a list of super detailed symptoms, but still the minimum amount that you don’t think makes you look like a “crazy” person, they tell you to stay off of Google.

You come in with a vague list of every symptom you have experienced in the last few months, they offer to run some labs…which more often than not come back totally normal.

You come in with a detailed list of every symptom you can recall experiencing in your life, and they say you’re a hypochondriac.

You come in asking to be tested for a specific condition, giving reasonable and appropriate answers to their questions as to “why?” You’re truthfully answering about your symptoms when questioned.

It’s a game of spin the wheel to see which of the above responses you end up landing on before you leave the office, and a lecture on self- diagnosing/staying away from the medical shows/getting off of the forums, etc. Thrown in is the possible meds that will probably make you worse, and more testing which racks up the money.

We are the frequent fliers of the ER. The regulars at the doctors office. The ones who get “the usual” when we finally suck it up and go to the primary care physician  for “real sick people” symptoms; the ones that tend to repeat themselves, resulting in the same throat swab, blood work, x-rays, etc…every time you are in.

There is no follow-up to schedule, just a “see me if things get worse.” There sometimes are no answers. Yet, there almost always seems to be a string of prescriptions ready to pick up within an hour or so. That is if you didn’t get a shot of something while you were there, or need more than that because our bodies got bored with our chronic issues and snickered deviously along with the bacterial infection that was brooding somewhere in your body, just waiting for the surprise on your face when you woke up in a full blown case of it.

We are not hypochondriacs. We are aware. We have bodies that betray us for simply living. And if we fight them back, sometimes they push back harder. Yet, still we push on. Don’t complain that we missed this or couldn’t do that, when every minute of our lives is soaked in the thoughts of how one thing will domino into the other.

“Don’t think about it so much,” they say. I’m sorry, but I have to. If I don’t tomorrow, or even an hour from now, I will be thinking about it because my body is forcing me from whatever I did in the meantime.

I don’t think about it directly, it doesn’t consume my every thought. Yet, it’s that pot simmering on the back burner constantly, filling the kitchen with an aroma to remind me something is cooking.

If I push myself, what do I need to recover? If I eat this, what meds do I need on hand? If I have to get up early tomorrow, how do I need to stage my pills differently to accommodate the schedule and not cause interactions? If I skip these meds, will I be near a bathroom tomorrow when the decision to forgo them strikes? If I don’t drink all the water I need, how can I compensate? Is it worth it to push myself to do this thing, and miss on “X” amount of things following?

Not only do I have to think about things like this, but how they affect people and life around us: restaurants chosen for food needs, atmospheric requirements (stimulus issues), a quiet gathering with a few people prior to or after the event simply for your sake, to prep yourself mentally, or decompress after.

We are anxious because we have to have all of these things in mind —and know we seem like hypochondriacs — and expect every appointment to be a battle for our best health.

But we are in fact sick.

I had a doctor tell me I was too young for something after years of no answers, but I demanded testing and when it came back positive she apologized and we have gotten on ever since.

They are trained to take care of the human body, but sometimes even our best days feel far from human. You are the only one who knows your body best, and ultimately take care of it. Fight for it.

Make your lists. Be prepared. Listen to what your body is telling you, and find a way to tell everyone else.

There is only one mouth for our body, and unfortunately that means having to talk about things and for parts of our bodies we wish we didn’t have to. But they are counting on you to speak up when they can’t.

Listen to your gut.

Speak from the heart.

Follow where your feet take you.

You and your body are stuck on this journey together, best to find a way to get along.

Photo credit: Kangwan Nirach/Getty Images

Originally published: July 12, 2019
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home