The Healthcare System Can Feel Like Its Own Chronic Illness

Written By J.T. Oden

I've spent my entire life in and around healthcare.

Literally.

I was born with sickle cell, so I've never really known a version of life where doctors, nurses, hospitals, insurance, medications, lab work, and appointments weren't part of the scenery.

At this point, I have a pretty complicated relationship with all of it.

I appreciate healthcare. I really do.

I also don't want to talk to anybody sometimes.

There are times when my insurance company calls and I see the number and think, What could we possibly have left to discuss?

Especially when we went over the same things a couple of months ago.

I know you're trying to help.

I appreciate the help.

But...

Could we maybe not?

And then there are the third-party companies calling on behalf of insurance to tell me about additional benefits and resources.

Some of them are probably genuinely useful.

But every once in a while, I listen to the whole thing and think:

This could have been an email.

I suspect I'm not alone in that feeling.

Then there are the moments in actual healthcare settings that stay with you.

I've had nurses ask me things like, “How long have you had sickle cell?”

The first time someone asked me that, I honestly thought it was a joke.

I remember thinking, Okay...we're making jokes to lighten the mood.

Nope.

She was serious.

And what do you even say to that?

I've also had the experience of being in pain while my labs looked normal.

That's a particularly strange place to be.

You're hurting.

You know you're hurting.

And yet there are numbers on a screen that seem to suggest everything is okay.

I think that's one of the hardest parts of living with a chronic illness that other people can't necessarily see. Sometimes you have to explain something that you are experiencing very clearly but that someone else can't measure quite as easily.

And then there is the whole complicated relationship with pain medication.

When you're in the hospital receiving medication through an IV, you can eventually reach a point where you feel pretty good.

You may even start thinking, Okay. I'm getting back to myself.

Then you go home.

The medication wears off.

The pain starts creeping back in.

And your body may also start reacting to the sudden change in medication.

It's hard to describe what that feels like, especially when you're already exhausted and recovering. There's a mental fog to the whole experience that makes it difficult to even put the experience into words afterward.

You just remember thinking:

I was feeling okay.

What happened?

And then, because apparently the experience needed one more layer, you can eventually receive a hospital bill while you're out of work because you were medically required to be out of work.

There's something almost comical about that..

I don't tell these stories because I think healthcare is terrible.

I don't even necessarily have a solution.

And honestly, after a lifetime of this, I've learned that sometimes I don't need a solution.

Sometimes I just need to say:

“This is exhausting.”

Sometimes I don't want another phone call.

Sometimes I don't want another appointment.

Sometimes I don't want to explain something I've already explained.

Sometimes I don't want to hear about another benefit, program, referral, resource, or follow-up.

Sometimes I just want everybody to leave me alone for a bit.

Even when I know they mean well.

Even when I know the call might be important.

Even when I know I'm ultimately going to have to deal with whatever it is.

I think that's one of the strange things about living with chronic illness for a long time.

Healthcare can become so intertwined with your life that you can simultaneously be grateful for it, frustrated by it, dependent on it, and completely exhausted by it.

And maybe that's okay.

Maybe we don't have to choose one feeling.

So this isn't really a healthcare rant.

It's more of an invitation.

What's your “you have got to be kidding me” healthcare story?

What is the thing that makes you see a phone number on your screen and immediately think, Absolutely not today.

What question has a healthcare professional asked you that made you wonder whether they were joking?

What part of managing your illness makes you think, Surely this could have been an email?

Tell me.

Complain.

Roll your eyes.

Tell the story you've told your friends a hundred times.

I'll probably understand.

And if nothing else, maybe we'll discover that the thing we've been quietly thinking is ridiculous isn't just happening to us.