The first time I had sex, I had a seizure 18 minutes into the whole shebang. Or he-bang, I guess. Two days later, I got my diagnosis: Non-Hodgkin’s Lymphoma (NHL). I was 23. That was the starting point, the point where I’d eventually get my first port catheter connected to my body at all times. Being self-conscious was my entire personality back then, wondering who around me might find me unattractive and why. The port under my skin felt like an obvious answer.
Because of the NHL, another condition — the one that had been kicking my ass since age 12 — started acting up. The other condition? Type 1 Diabetes, or, as we call it in the diabetic IG community, T1D. As a result, my health tanked and so did my social life. So I got an insulin pump, a device that would pump a continuous, precisely calibrated stream of insulin into my body at all times. It was supposed to give me more freedom, socially.
By the time I’d received my NHL diagnosis, my emotional grid had already taken a bootlick up the ass and then some. Adding an insulin pump to the grind of daily medications, doctors appointments, food and lifestyle balancing was…it was work, like when you’re pulling on your favorite pair of jeans, but you know it’s gonna take some wiggling and seven different yoga poses to get into them. The pump, shaped like a pager, had a thin, flexible plastic tube attached. One end of the tube went into the device, and the other would feed into a plastic catheter, which I would have to insert into my body once every 10 days.
For a while, I started clipping the pump to my pants and pretending it was an actual pager because at that point, ’90s fashion had reared its cute little head and was making its fated comeback. I walked down every street in LA like I had people in my life who’d “beep me.” No shame in my gotdamn game.
The insertion sites for the pump could vary, but with the amount of fatty tissue (not) on my unhealthy body at the time, choosing a site was difficult. It was abdomen, arm or thigh. The thigh was likely my best bet, but it made me feel weird to have the catheter so close to my pubic area. I wasn’t quite kinky enough for that just yet. Plus, remember those favorite painted-on jeans? How the hell was I supposed to make that shit work? My arm was fine, but it was difficult to settle the pump where it should go and it was hard to hide both the device and the insertion site. I thought if I could present an outward appearance of NormalTM, then maybe, eventually, I’d get there and even believe it myself.
I mention all this technical stuff to paint you a very clear picture. The NHL meant I underwent chemotherapy and had to wear a port catheter on my chest, somewhere just under the collar bone, under my skin. The first time I tried out sex with that thing attached, I spent more time answering his curious questions than he spent on foreplay. Needless to say, we didn’t work out. Let’s call him A.
When A touched me, I knew he was afraid of breaking me. His touch became the La Croix of touches, the badly executed ASMR of touches. He touched me like I was my disease. Word of advice to you, A: stop asking those science-type questions with both your mouth and your touch. Let the consent talk do its job and then understand that the specifics of my medical care are mine and mine alone. And also my oncologist’s. And my endocrinologist’s. But mostly mine, dude. If that port is going to limit me (or you, for that matter), I’ll let you know. More likely than not, any of us wearing a port and doing sex will give it to you straight up. After that, I got lucky. I met T.
T was patient with me. T was not overly serious or overly curious. He was not so fascinated by the — third and newly installed medical device to meet my body — Continuous Glucose Monitor (CGM) in my arm, not the port in my chest, nor the wireless insulin pump stuck to my abdomen.
That last one was new to my word, too. I’d been wearing insulin pumps with wires and buttons that might accidentally get pushed if I was pressed down too hard while my partner was hitting it from the back. This one has no wires and is about the size of a Tamagotchi. I still wear it now (the pump — not a Tamagotchi, unfortunately). So that’s one me, one T and three medical devices all sharing space in bed together.
The thing about T was not that he gave me some romancey line like “stop apologizing” that made me feel seen. It was the fact that I didn’t feel like I had to apologize for my physical limitations. I just was. I felt very comfortable with T before we’d even shared so much as the hard press of our lips together. Realistically, even with the three devices, sex was still possible and still good. Who knew!
And yeah, maybe the phone-sized remote that controlled my pump might beep to alert me to a change in insulin delivery. Or my actual phone might vibrate to tell me my glucose numbers were shifting or my port might pinch if I accidentally shifted it too hard in one direction. Maybe my lingerie clashed with amy one of those devices. Sometimes all of those things happened with T, and we adjusted, laughed together and switched positions. Or we stopped altogether because occasionally, vigorous sex can cause glucose to drop rapidly, which is dangerous and not a thing I fuck around with. If my numbers are dropping, get off me, bro. I mean, look. It is a form of exercise after all. It makes sense.
But after T, whom I still refer to as The One Who Got Away, I met N. That asshole. Had me trying too hard. He was angry about everyfuckingthing — having to stop, having the constantly beeping (which cannot be silenced or turned off) pump remote interrupt us from the bedside table, where I insisted it had to be. I suggested we fuck to music once to cover the beeping, and he shut down the idea. He said it was distracting. When he complained about being able to smell the insulin from my pump (pretty sure that was my deodorant, but ok), I suggested we light scented candles. He said they give people the wrong idea about romance. Loser had issues with the small stuff all the way up to the big stuff, like having to look at my quite-possibly-infected port site and drive me to the hospital after he finished (it turns out it was actually super infected, so. Whoops. My bad, N. Or whateva.)
To be frank, things with N didn’t end because of my medical hardware, my cancer or my diabetes. Things ended with N because actually it turned out he was married. So. But I assume things would’ve run their course eventually because I did do a lot of apologizing to him whenever we had sex. And that’s mostly because every woman and femme on some level has been taught to be measured.
Fear not. I met J after that. J was lovely and beautiful and so giving as a sex partner that it restored my faith in the act. See, I’m demisexual, and if you consider that I’ve had four sex partners of varying degrees in nine years, the time I spend teaching people about my diseases and how to share rewarding intimacy with me averages out. Still, it’s worth mentioning that the two times I’ve had good and healthy sexual experiences were with queers of color. There’s a dynamic there that I haven’t found anywhere else. Although the experience with J was short-lived. Geography wouldn’t allow for it. But, pretty easily, they stopped being a person I had sex with and instead became my platonic friend. My confidante. My family. And that’s been immeasurably valuable, too, to talk to them about how things are now that my body is, even with my medical devices, breaking down slowly but surely.
To J, to T — I have only this to say: So much of my daily energy goes to chronic pain now. And I hate it. But I know how to find moments of joy, an example of which is not accepting the bare minimum from my sexual partners when we are intimate. And that’s been such a wild ride with you both.
To the N’s of the world, listen and listen good: you will have to make allowances or wait for me. You will have to figure out how to conjure the concept of patience they taught you in grade school. You will take me as I am. There is no “or” being offered here, no more “love-adjacent-like,” as my best friends like to say. Nothing is perfect in my life, but at least I can say there’s no scent lingering in my figurative candle of sex-doubt. Just timid, twisting smoke where the flame was once ablaze.