When “Just Call and Ask” Isn’t Simple At All

I had to refill a prescription this week. One prescription. Here’s what that took: a call to my mail-order pharmacy, who told me they’d outsourced the fill to another pharmacy. An online chat that couldn’t help and told me to call. A phone call that got transferred four or five times. A dropped call that sent me back to square one. Over an hour of my life, gone, for one medication refill.

I work in healthcare. I know the terminology. I know how to advocate for myself, how to ask the right question to the right department, how to stay calm when I’m bounced around for the third time. And it still took over an hour and multiple attempts.

So here’s what I kept thinking the whole time I was on hold: what if this were someone with an intellectual or developmental disability, trying to do this alone? What if it were someone managing a mental illness that makes phone calls with strangers genuinely distressing? What if it wasn’t one prescription, but three or four, each with its own insurance quirk, its own outsourced pharmacy, its own hold music?

This is the part of disability life that rarely makes it into the awareness campaigns. It’s not the diagnosis. It’s not even the therapy appointments or the IEP meetings. It’s the sheer administrative weight of staying alive and medicated in a system that assumes everyone has an hour to spare, the executive function to track a call through five transfers, and the nervous system regulation to not get overwhelmed when it all falls apart and you have to start over.

And then I thought about case managers — the people whose literal job it is to do this on behalf of someone else, over and over, for a caseload of people, day after day. That’s not inefficiency on their part. That’s the system requiring an entire profession to exist just to translate its own complexity back to the people it’s supposed to serve.

If you’re a sib, this probably isn’t new information. Maybe you’ve already made “the call” for your brother or sister. Maybe you’re the one who knows which pharmacy actually has the medication versus which one just says they do. Maybe you’re bracing for a future where that becomes a bigger part of your role than it is now.

I don’t have a tidy fix for a healthcare system this tangled. But I do think naming it matters — because when we call it what it is (a system that requires significant cognitive and administrative labor just to function inside of), it stops feeling like a personal failure when it takes an hour and five transfers to get one prescription filled. It’s not you. It’s the maze.

If you’ve got a “the system nearly broke me” story of your own, I’d love to hear it — reply or drop it in the comments. And if you want more of this kind of real-talk landing in your inbox, join the list here.