The Illnesses We Can’t See

This is one of the essays I delivered to my patrons last month. I’m posting it here now in part because there’s more nonsense going around about the HPV vaccine. We talk about bad things that happened to people who were vaccinated. We don’t talk so much about what happens to people who weren’t. If you want to support more work like this, and see it earlier, you can sign up here.

I’ve been sick. No, really.

It’s not surprising. There’s a summer cold that’s been making the rounds. It’s been months since I was sleeping regularly (or it had been). Being allergic to grass was already putting a strain on my immune system. It was going to happen. The only surprise is that it hasn’t been worse.

Well, no. That’s not quite true. The other surprise is that part of me wanted it to be worse.

As summer colds go, it wasn’t terrible. I mean, it wasn’t great either. My face hurt from the sinus pressure. My teeth hurt from the sinus pressure. My inner ears hurt when they weren’t itching. My throat hurt. The canker sore–ugh! I slept so much, and I wanted to sleep more every minute of every day. The occasional sneezing fits made that difficult, though.

And all you could see from the outside was that the circles under my eyes were very slightly darker than usual. Even in the middle of the sleep and the Anbesol and the ibuprofen and the hot liquids, I wanted proof I could show other people that I really was sick. Not having proof, I began to feel like I was faking it. In between naps and painkillers, of course.

I know it’s silly. I shouldn’t need other people to know I’m sick in order to believe it myself. On the other hand, I’m not alone in this. And if I allow myself to think about why I feel this way, what I get are all the times I needed to be able to pull out that proof, not for myself, but for other people.

I’ve talked plenty about the junior high gym teacher who didn’t believe me when puberty turned out to be let’s-break-that-body time. I mean, yes, it’s a little weird that my knees and my toes and my lungs all went to hell at more or less the same time, but I liked running. It was an independent sport, where I didn’t have to be social to be active. It tasted like freedom…right up until it tasted like pain.

It wouldn’t have been a hard thing to tell me these were the kinds of things that warranted a doctor’s attention instead of squinting at me and saying they needed a doctor’s note. That little difference would have meant the world. I wouldn’t have gone three years before talking to a doctor about my knees and toes and more than three decades before talking to a doctor about asthma. (And I still need to make that appointment with the pulmonologist.) I could have been able to salvage a relationship with exercise for its own sake. I probably also would have known decades sooner that the arthritis is all merely structural, rather than immune-related, so I could worry less about the diseases that run in the family.

I might even have taken myself seriously those times I came close to passing out: on the dance floor and the hiking trail but also on the bicycle in traffic, on the side of that mountain, on the scuba regulator. It’s a little weird to think about how close you can come to dying just because you couldn’t show someone your lungs to verify that what you’ve said about them is true.

Not that doctors are necessarily great about this. There was that decade or so where I went undiagnosed with migraines because the ophthalmologists I saw all asked me about seeing lights and other strange things, then met my answers with silence. Since most of my migraines aren’t painful, and I had no idea that was possible, I had no reason to make the connection. They never bothered to make it for me, just ignored me as though I was only making up something to tell them because they asked.

Then (oh, then, oh, then, oh, then) there’s the surgeon who performed the LEEP to remove my precancerous lesions. I didn’t think I’d started this essay to finally talk about him, but maybe I did.

Photo of a plush red blood cell next to a blood donation sticker on a table.
Things were not this cute. “Plush blood cell” by Phil Genera, color adjusted, CC BY-SA 2.0

Hang on. This may get graphic.

It’s been nearly seven years since I wrote about discovering I might need surgery. I’ve avoided writing about the aftermath all this time, though I’ve alluded to bits of it.

Obviously, I did need the surgery. I needed particularly extensive surgery because the precancerous cells were themselves extensive, and I was referred to the surgeon whose name I seem to have successfully memory-holed because he could handle something that big and unusual. I joke about having had my cervix resurfaced, but it’s true. He left very little of the original. He also took a fair amount of the tissue surrounding my cervix.

If you look at the standard LEEP procedure, well, that’s not me, except for the basic facts of the purpose and the tools. I had general anesthetic and was sent home with Vicodin, not a local and Tylenol. This was how I learned all the fun things about me and Vicodin, like its ability to give me motion sickness, the fact that I can’t sleep doped up, and the joy that is occasionally taking a narcotic painkiller and having it have no effect whatsoever.

Oh, and that “mild cramping”? Um, yeah. They don’t give you narcotics for mild cramps. The other reason I call it resurfacing is that it felt like someone had taken heavy construction machinery to me. My cervix and surrounds were a ball of pain around which the rest of me existed. When it got bad, it was more real than I was. The only time I’ve been in worse ongoing pain was when I sprained my back as a teen, and I could give myself breaks from that by lying down and not moving.

As it turns out, though, not moving would have been a good idea. I didn’t have any activity restrictions prescribed, maybe because the narcotics were supposed to take care of my will to move. Or maybe nobody really knew what was going to be a good or bad idea in my case.

Either way, a couple of weeks after surgery, I was feeling well enough to have massive cabin fever. I’d sorted out sleeping and narcotics well enough to put in some real healing time. I was starting to shed scabs, which is a body-horror experience I wasn’t prepared for. The pain wasn’t gone, but I’d reached a point where I could think around it and it wasn’t too bad while I wasn’t moving.

I was ready to head back to work, on schedule, out of boredom if nothing else. We had a weekend first, though, and we spent it with friends “Up North”. At that point, that meant a borrowed lake home with groceries carted in and out because no one lived there full time. We sat around, chatted, laughed, and everyone but me used the hot tub. It was exactly what I needed emotionally.

It was the groceries that got me. Leftovers specifically. Feeling pretty good, I decided to carry our cooler out to the car as we got ready to head home. That was when the bleeding started.

I still don’t think I can describe what it was like in any coherent way. I can tell you that the copper scent of real blood is nothing like the smell of purging your uterine lining each month. I could probably find a way to describe the feeling of a large clot slipping out of your body, but my brain slips away from the experience every time I try to sit with it long enough to find the words.

I can tell you I didn’t go back to work the next day. I lay in my bed and tried to move as little as possible. That meant bigger clots, as the blood pooled instead of draining, but no clots that stopped the bleeding. It is a frantic thing to bleed and keep bleeding and not be able to apply pressure to the wound. For someone with my particular pathologies, it feels like constant failure. I know the solution. I just don’t/won’t/can’t put it into practice.

The next day, it was better. Maybe it was better. It at least wasn’t worse. To get out of my head and out of the house, I went to a group dinner for someone who had come into town for a talk. Toward the end of dinner, I laughed. I gushed. I won’t ever describe that sensation for you either.

I politely excused myself to the bathroom to confirm what I had felt. I politely explained to people that we wouldn’t be joining them at the talk but going to the emergency room instead. Even then, you couldn’t see from the outside that anything was wrong.

It was a bit more obvious when I got home. I changed pants and pads, left my bloody jeans in the tub for later, grabbed a large book, and headed for the hospital.

I remember Fox News in the waiting room. I remember hoping I wouldn’t bleed on their chair. I remember the oxygen monitor on my finger and the numbers that meant nothing to me. I remember multiple doctors and multiple specula. I remember making everyone laugh by way of apologizing for being such a bother. I remember cotton–swabs and pads–and the pain of even trying to lightly dab away the blood to see the problem. That’s when I discovered that tampons aren’t really “highly absorbent” and that this is a very good thing. Having the moisture pulled out of your tissues hurts.

I remember pressure, finally, and the strange relief of sharing my failure with a professional when I kept bleeding. I remember consultations. I remember a chemical cautery stick with its own special burning pain. I remember more consultations and this slurry of a heavy-duty coagulant. It turns out it’s the stuff most people get right after their LEEP.

That worked. This was good, because it was the last thing the doctor had up her sleeve. After about half an hour of me sitting around to make sure it was still working, they sent us home. It was after midnight, and I sent Ben to bed while I sat up a bit. I was exhausted, yes. I also wasn’t anything close to asleep. I could say I was wired or edgy. The truth is that I was scared, that I’d been holding it together in the hospital by sheer willpower and needed time to not do that anymore.

I don’t remember what I did. Sneezed? Coughed? Shifted in my chair? Nothing whatsoever? I don’t know. All I know is that I could tell I was bleeding again. So I checked. In among all the gelatinous brown from the coagulant was fresh blood. It wasn’t a trivial amount.

I woke Ben up to take me back to the hospital. Then I sent him home so someone would be rested enough to pick me up when they were done with me. That’s the last I really remember being coherent, though I probably managed to at least pretend to be a model patient when needed. I am that Minnesotan.

They were out of options for me until morning, but I didn’t have to wait with Fox News this time. They gave me an exam table and a fresh oxygen monitor and a bunch more gauze pads to absorb the blood. Tampons aren’t sterile, after all, for all they’re smooth and only appropriately absorbent. I had the staff’s brisk, efficient sympathy but no painkillers, not that I’d asked. I wanted to sleep, even though I didn’t manage it.

Painkillers probably wouldn’t have mattered anyway. Morning eventually came with the cautery machine wheeled down from surgery and my surgeon’s business partner handling me quickly before her shift started. That’s when they gave me fentanyl and pulled all the cotton out of me. Damp gauze is still rough gauze, or maybe I’d just had all I could handle. The fentanyl had no effect. They offered me more, but I told them to just do the cautery. They did both spots that were now bleeding. I finally stopped bleeding nearly three days after I started, even if I hurt more than I had after surgery.

After I woke up, at home that afternoon, I asked a friend to meet me somewhere because I didn’t want to be alone. He’d been at the dinner. I told him I’d spent the night bleeding in the emergency room. He still chose a location a mile from a bus line. It wasn’t until he saw my pale, anemic face that he really believed I’d been through something as traumatic as I’d said I had. He drove me home, which helped. I wasn’t going to make the return walk. I went back to bed when I got home and stayed there.

Two weeks later, I was trying to get back into normal physical activity by cleaning when I started bleeding again. It wasn’t as bad as the first bleed. It tapered off on its own and stopped in a couple of days. I was still too scared to move normally for weeks.

That was the second time a bleed had interfered with a scheduled return to work. They decided that, since my own word on my physical health was so worthless, they needed something from my doctor. Not counting the crew I put to work in the emergency room, the only doctor I was seeing with regard to my surgery was my surgeon, so I asked him.

He refused. He wasn’t going to excuse my lengthy absence from work.

Now, he hadn’t seen the second bleed. No one had but me, because I couldn’t face another hospital experience like that with the first bleed. It might not have been rational to tell myself that if they cauterized again, I’d just bleed again, but reacting irrationally is a far different thing than lying about what happened. More importantly, acting irrationally was a pretty reasonable reaction to what I’d been through. I’d reported a bleed after a complicated surgery that had produced multiple bleeds already, with records he had access to, but I wasn’t a reliable witness to my own health.

The company I worked for, already happy to insinuate that I was gone from work for the fun of it, followed his lead. I got to sit through disciplinary proceedings that essentially told me to my face that I should have gone from the emergency room to work.

My friend, whom I’d asked for support, failed to take care of me. My surgeon, whom I’d hired, failed to take care of me. My employer, for whom I’d long been an absurdly productive and effective employee, failed to take care of me. They all failed in their care of me because they couldn’t see what I’d been saying about my health. And it was my fault for not being visibly ill and in pain and all those other things that they tell you cause a predator to cut you out of the pack.

So maybe it shouldn’t surprise me now when I want visible signs of illness. Maybe I shouldn’t call it silly. Maybe I should call it what it is, which is the absurd standard that I have to make my pain visible to have it taken care of, that my words aren’t enough. And then maybe, just maybe, sometime when I’m done being sick maybe, we actually do something about changing that.

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The Illnesses We Can’t See