Mojo and the Mess

I knew treatment would be hard.

I didn’t know I’d spend this much time on the phone.

There’s a version of being sick people understand.

Appointments. Chemo. Scans. Bad days.

What they don’t see is me pacing around the house with my phone on speaker, waiting for someone to pick up so I can explain, again, why I need something my doctor already said I need.

It’s never just one call.

It’s calling, getting transferred, sitting on hold, explaining everything, being told it needs to be reviewed, hanging up, calling back days later because nothing moved, and starting over with someone new.

By the time it’s handled, I feel drained.

And I still have to deal with being sick on top of it.

Then there are the denials. You open the portal or get the letter and it says something like “not medically necessary” or “not approved,” and for a second you just sit there trying to make sense of how that decision was made.

Because to you, it’s not abstract. It’s your treatment. Your timeline. Your body.

And suddenly you’re in another loop of calls and appeals, trying to fix something that never should have been denied in the first place.

There’s also this whole layer people don’t realize exists until they’re in it.

Peer reviews. Which sounds reassuring until you understand what it actually means.

A doctor you’ve never met, who has never seen you, reviewing your case on paper and deciding if what your doctor recommended is necessary.

So now it’s not just you advocating for yourself. It’s your doctor having to justify your care to someone on the other end of a line.

And you’re sitting in the middle of that, waiting.

The financial side of it never really leaves your mind either. Even when something is approved, you’re doing the math in your head. What’s covered. What isn’t. What’s going to hit your deductible. What you’re going to have to figure out later.

Bills show up at different times, from different places, and half the time you’re not even sure what they’re for until you call and ask.

And that’s another phone call.

It adds this constant pressure that doesn’t really shut off.

You’re thinking about your health, your treatment, your next appointment, and right alongside that is this running list of things you need to follow up on, check on, fix, or fight.

It’s hard to fully focus on getting through treatment when part of your energy is always tied up in making sure you’re even allowed to have it.

There have been days where a phone call has taken more out of me than treatment.

Not because of what was said, but because of how much it takes to stay steady, to keep explaining, to not lose it when you’re hearing the same answers over and over.

You don’t want to be labeled difficult. But you also know if you don’t push, things stall. And when things stall, it’s not just inconvenient. It matters.

This is the part that doesn’t get talked about enough.

Being sick is one thing.

Managing the system around being sick is another.

You end up learning a whole new language.

Authorizations. Appeals. Peer reviews. Coverage limits.

None of it is something you asked to understand.

But it becomes part of your day-to-day whether you want it to or not.

And yeah, you get better at it.

You learn how to ask the right questions.

How to follow up.

How to keep things moving.

But it still takes something out of you every time.

If you’ve ever opened a denial letter and felt your stomach drop, or sat on hold knowing you’re about to have the same conversation all over again, I get it.

It builds up.

And it’s a part of this that deserves to be said out loud.

❤️

If this is your first time here, this is what I write about. The parts that happen in between appointments, the things people don’t always explain, the pieces that are easy to miss unless you’re living it.

You can subscribe if you want more posts like this, or check out the Resources page if you’re trying to figure things out in your own way.

And if you’re already here reading this, thank you. That matters more than you probably realize. ♡