There’s no villain in this story. That’s what makes it so hard to write, explain, and live.

I have a complex medical history. It’s been active lately. I’m still seeing doctors and putting in more energy than I have to try and untangle this. Maybe it’s one of my autoimmune diseases progressing. Maybe it’s something new. Maybe it’s stress or sleep deprivation. Maybe perimenopause is knocking at the door. I don’t know yet. That’s part of the thing. Part of the exhaustion.

I was referred to an internal medicine clinic. They ran so many tests I felt dizzy. In the States, I’d have had a mild heart attack at the bill. But here the mentality is different. You keep a paper trail, you wait your turn, you do all the preventative you can. So I did.

In the meantime, I prepared a document for my followup appointment. I did it the way you take notes on a lab experiment, experience has taught me that if I don’t bring the whole picture with me, no single person in the room will fill in the dots. Everyone should really learn that, doctors can only help if they have the whole picture and if you advocate for yourself. Its ok to push back, as long as we’re all polite.

So the first appointment went one way. The second, I got a different doctor. Frustrating, but they rotate in this clinic. This new doctor, he listened. He was reasonable. But we were following up, not starting over, so he reached for a reasonable tool to try to help one of my issues. It was a logical next step given what he knew. The problem is what he knew felt partial. And he wouldn’t even touch the hormones. “Sure I’ll test them if you want, but you’d need to see a specialist about taking hormones.”

I felt deflated. Sure we were going to try this “new” medication for my gastroparesis, but the thing that I think is driving some of this wasn’t even touched. We left, then the pharmacist called later to tell me about the prescription. She kept saying it was for nausea and vomiting, which I do have, but it’s all driven by my gastroparesis. Which is one of the top struggles I’m having. It’s a problem that cascades.

The doctor had suggested we try something different for the gastroparesis. I didn’t recognize the medication name, and she kept saying, “yes, it’s used to treat gastroparesis.” I really hoped this was something for that specifically. Something that would actually help my digestive system move, to work. In the back of my head it didn’t feel right though, something about the way she phrased it. But I’m not a doctor, or a pharmacist, so I lean in and listened. Lets try the new medication, see what happens. My husband pushed back when he went to get the medication, he was reassured. We thought we understood. I thought I understood.

When he brought it home I googled, I researched. It was zofran. I mean it wasn’t, it was the Canadian generic version of that, and I didn’t know the name. I didn’t know to ask that. There isn’t a button you can press if you’re new to the country and just don’t know all these general things people know. So I ended up with a medication I don’t need. One I’ve taken before. One that for me will actually contribute to the constipation that causes the very symptoms, nausea and vomiting, it’s meant to help. A hundred dollar charge. And an appointment’s worth of the thing I most needed to discuss left untouched.

Nobody did anything wrong. The doctor rotated in and used the information available to him. The pharmacist answered the question she was asked. My husband advocated in good faith. The system moved the way systems move: in pieces, passing you from hand to hand, each one doing their small part correctly.

But I’m sitting with a stapled pharmacy bag and a hundred dollars gone and another phone call to make that shouldn’t have been mine to make. That feeling of wanting to cry, and also sigh so loudly the room shudders. Of just wanting to give up, my symptoms aren’t so bad today. I’m alive. Its fine. I’m fine.

This is what chronic illness actually looks like. Not usually a dramatic misdiagnosis. Not always the dismissive doctor who waves you out of the room. Just the ordinary accumulation of small miscommunications in a system that wasn’t designed for people whose conditions don’t fit cleanly into a single appointment, a single specialist, a single story.

We talk about women dying because they say and they say and they say that something isn’t right and nobody listens. That’s true. But there’s a quieter version happening alongside it that we talk about less. Not the bleeding out on a table. But the boring, unglamorous, nondescript accumulation of not being able to live your life and it costing you more than you can articulate.

The healthcare system, in my country of origin or my new home country, is built for acute, dramatic, and visible, and has almost no architecture for chronic, diffuse, and invisible. Glamorous illness has a narrative arc. A diagnosis moment. A treatment. A resolution.

What I’m living doesn’t have that shape. It has good days and bad days. It has debilitating moments but some I almost feel okay. It has symptoms that overlap but don’t point one direction. It has weeks of preparation for an appointment that doesn’t get to the root of anything, much less even get more data. It has a lesson learned that shouldn’t have been mine to learn. I still absorbed the cost: financially, cognitively, emotionally. I have a pharmacy bag with a staple in it to prove some of that.

And there’s nobody to explicitly be angry at. There’s not moment that is singularly wrong or a failure. Which in and of itself is its own kind of exhausting, its own kind of grief.