Diagnosis Roulette: What It’s Like

Sometimes I try to run from the pain.

It hit as I drove up the driveway. I got in the car and turned the key, thinking that I was feeling alright. A bit rotten. A bit run down, because of the prep I’d had to do for the scan. A bit sore. A bit achey. Mostly, though, I was alright.

About halfway up the driveway, I felt a slicing pain across my stomach.

Slice.

Slice.

Slice.

It got to the third throbbing “slice” before I actually just said, out loud, in the car, by myself: “Ow. Ow. Ow ow ow.

I parked at the top of the driveway, and picked up the note I intended to drop into the neighbours’ mailbox, inviting them over for tea (we hadn’t really got around to catching up with them, and I thought the fact that their dog jumped the fence to play with our dogs was a great excuse to have tea. Or coffee. Or whatever).

And I ran to their mailbox. I ran away from the knifing in my stomach, a pain with which I am increasingly familiar, a pain I refer to as “knifey pain” to distinguish it from “stabby pain” or “throbbing burning pain.” If I could run, how bad could it be? I ran in my low-heeled leather boots and my jeans, wonky, and tired; maybe fifty metres there, fifty metres back to the car, to drop that friendly note – that promise of future conviviality – in the mailbox.

I’d never been able to run, as a child. I’d never been able to move, not really, not with my joints, and I hadn’t even known why, but I can run now, and if I can run, if I can get my body to fly the way I sometimes feel when I’m singing, how bad can the pain be?

When I got back to the car, I was shaking, the edge of tears in my eyes, and I was thinking, “but this isn’t that bad. How can I be crying? It isn’t that bad.”

This is the problem. This is what I’m torn between. When you don’t have a diagnosis, when you don’t know why it hurts, and when the pain is intermittent – sometimes it’s there, sometimes it’s all you can think about, and sometimes it’s conspicuously absent and you wonder if it was ever there, if it was ever that bad, if you’re imagining it, if you’re being dramatic, or overreacting, or hysterical – and then it comes back, and in those moments you know it’s real, and it’s awful, and you wish it wasn’t, but part of you thinks “Thank fucking Christ, it’s not all in my head, it really does hurt.”

Having a high pain tolerance makes it worse in a way, because up to a certain point, you can set it aside. I found out recently that I can set it aside for six hours of knifing pain while I get necessary work done. I don’t have so much paid work that I can afford to say “I’m sorry, I feel like someone is dragging a sharp blade ever so lightly across the external surface of my stomach – or perhaps my small bowel, I’m not clear, honestly – so I can’t come in to work today.” People would understand. Of course they would. And Husband’s job is an excellent one, and can keep us in gadgets and premium dog food and house mortgage quite nicely without me having to work while clutching my gut in pain.

But that’s not how I want to live. I want to work. I want to get things done. I like my job (my various jobs, honestly). It’s fun. It’s interesting. So I go in, and I get things done.

Then I end up in a space where I’m distracted by the pain, so I have to take pain killers. The only useful painkiller I have ready access is codeine which is, yes, a narcotic, and monitored, and addictive. I have to decide how bad the pain is and weigh that up against my need to, well, drive and operate heavy machinery. I generally try to avoid taking it. I only take it when the pain is quite severe, when it’s overwhelming, when it’s becoming acute.

When it’s all I can think about. When I try to run to prove to myself it’s not that bad. When I lift weights to prove to myself that it’s not that bad. As if what I’m trying to prove to myself is that I shouldn’t complain, because it could be so much worse.

Because I’ve had pain that is that bad. It’s not common, but I’ve had pain where you can’t think past it. It’s rare. It’s horrible. And I do breathe; I set my lungs against the pain, and I breathe past it, as though I am the tide rolling over the rocky shore. In, and out, and in, and out, endless and strong and overwhelming past all the sharp edges.

And anything less than that, anything less than excruciating, is, by my scale, not so bad.

Except that of course it is that bad, and I have every right to complain.

I complain because I don’t know what’s going to happen every day. I complain because I just now opened up my packet of Panadeine Forte and there’s only five tablets left and I want to cry, because that’s two and a half doses, and I am trying not to take these, but it just hurts.

There’s no benchmark for this. There’s no good way to measure this. I’ve had an examination under anaesthesia (EUA). I’ve had a colonoscopy. I’ve had multiple MRIs. I’ve had ultrasounds. I’ve had blood tests, urine tests, fecal tests. I’ve had spirometry tests and a stress ECG. Today, I had a CT scan of my small bowel. If that shows nothing, then I get to have a gastroscopy.

When you have pain, when you can’t just say “I have… (disease name here)”, when you can’t point to a scan or a test result or a surgeon who gave you a name for what’s wrong with you, you start to wonder. You wonder what’s wrong. You can’t cut yourself slack for not getting anything done when there’s nothing wrong with you – or when what’s wrong with you doesn’t have a name yet.

Names and labels have power. They define things, and they limit things. They give space and shape and tangibility to concepts, to ideas and, yes, to sickness.

Names have power. Knowledge is power.

Right now, I am powerless.

And that is what it’s like.

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