Spoonfuls of Rainbow

By Laura Mayron '16

First: let’s catch up

Ever since my diagnosis (which you can read about in the October 2015 issue) I've been contemplating what it means to be queer and chronically ill. If you didn't read that article a quick catch-up: I have Crohn's disease, a gastrointestinal illness that affects my colon. What does that mean? Good question. I'm sometimes still figuring it out myself. On a daily basis, it means that I'm constantly checking in on my fatigue (or spoons, the quantification of physical and emotional energy while chronically ill—check out “Spoon Theory” for more details on this), watching (somewhat) what I eat, and, quite frankly, dealing with more poop than the average person. Every other week, I'm taking an injection, and on the other two weeks, I'm calling my pharmacy for more medication, or picking up my next monthly supply while making jokes about how it’s “that time of the month” again. I'm very lucky—luckier than most, and I try not to forget it. I went into remission several months after starting medication, and I’ve stayed that way. However, it's still a tricky process of a balancing act, even when in remission. I also have depression and anxiety, which my Crohn's can exacerbate, but the intersection of queerness and mental health is a whole ‘nother can of worms, and an article for another time. It's also something I've seen before, and heard discussed a lot, but what does it mean to be queer and have a physical chronic illness? As I briefly described in my last article, being in remission still is not the same as life pre-diagnosis. There are lots of little things I have to contend with: how many spoons I have for the day, whether this week is an injection week when I take my immunosuppressant that might make me feel fatigued, whether I'll have enough energy for that party that I promised I’d go to, and will feel like a flake for not showing up. It's a lot different now that I'm in remission, but I still think a lot about my debilitating months in a flare-up, especially in how it affected my queer identity.

On Being Queer and Chronically Ill (as I see it*)

*As I move forward with this discussion—a disclaimer! I’m a bisexual ciswoman, and while I’ve only come out and discovered the facets of my identity in college, I’m quite comfortable with expressing my queerness, but this is only my queer experience. I recognize that queer experiences differ for everyone, and while I occasionally toy with the label “demisexual” to describe myself at times, I have been open in exploring my sexuality, and this article will talk about sex. That’s not everyone’s experience at all, but from my perspective, here’s what I’ve started to understand about being queer and chronically ill. Queer spaces are primarily social spaces. It's very hard to be an active member of the queer community when confined to your bed. I don't just mean the dating aspect--but that's part of it. Forget going on dates, forget going to that cool queer party or nightclub: you're stuck at home exhausted and in pain, too tired to even have a glass of wine with your friends that live on the same side of campus. Even now, there's always a bit of nervousness surrounding going out and about in the city with friends or on a date—the coffee shop better have a bathroom, the bar toilet better flush. More than once, even in remission, I've been tempted to reach for the medication I know will stop me up for two days and make me feel awful, if only for the peace of mind that at worst, I'll just need to pee. It’s so much better than knowing the location of every public toilet in Boston, but I’m also trying to come to terms with being out, and out-and-about, while chronically ill, even if that means more trips to the bathroom. Queerness is so much about space, place, and interacting with others, whether as friends in a community or in a romantic context, and gastrointestinal illnesses aren't exactly a sexy topic of conversation. As I like to joke, Crohn’s disease is probably the least sexy illness out there—chronic diarrhea (or just a lot of normal pooping, when in remission) isn’t seductive for a Tinder date. There's also the question when I have a new partner, serious or otherwise: when to disclose that this is a part of my life? It's not contagious, no, but it affects the way I interact with the world, which is part of getting to know me in a dating context. There's always that fear that someone I like will be disgusted by my illness. They shouldn't be, of course, and no one I've met ever has been. It's hard though, knowing what my body was like before—and what it could be in the future during a flare-up. That's not something I ever want to deal with again, if I'm lucky: my body rebelling against me with the intensely physical manifestations of an illness that are so very not beautiful: the sweat, the shit, the tears. It literally all hits the fan. It's hard to desire and be desired when you feel like your insides are, quite frankly, a rotting marsh, the image I always had when I was sick. (Now that's something to put on a dating profile!)

Spoonfuls of Rainbow

You might ask, why the intersection of these two things? There are plenty of non-queer, chronically ill people that deal with much of the same struggles when sick. I've found, however, that coming out and being diagnosed are two creatures that share the same language. It's a revelation: intense, scary, and a whole world flipped upside down. For my queerness, it's been the most beautiful thing that I've ever come to know about myself, for my chronic illness, one of the most challenging. But at the outset, when I was diagnosed, it felt a lot like I did when I was still so confused about my sexuality and how re-defining it would change how I navigated the world. Both times, I was scared, uncertain, and not sure how this would change me. For many queer people, queerness for us is something so rooted in the body, whether it’s our relationship to sexual or romantic desire (or lack thereof) or in how we present ourselves to those around us. For me, my body is as much of a source of queerness as my heart and my brain. Whether it’s how I decorate my body with clothes, piercings, tattoos, or haircuts, or how I celebrate my body in its ability to love and be a recipient of love, my body is my queer temple. It's something I've come to own, to adore, and it has physically and emotionally carried me through questioning both my sexual and romantic desires. When my body turned against me, all that changed. Again, there's another article entirely that I could write about the sexualization of hypersexuality in queer spaces, but like it or not (and sometimes I don't like it at all) queerness and the body, at least now in our society, are very connected. Sex shouldn't have to be part of the queer narrative, but for many people, and me, it has been. So let’s talk about the "sex" in sexuality! As someone who only recently figured out my sexuality, and what that all means for my body, being diagnosed threw me for a huge loop. Finally, I'd begun figuring out my romantic and sexual attraction, how my body played into that attraction, how to love my body in sexual and non-sexual contexts, and suddenly, my body essentially set itself on fire and left me to watch it burn. It sounds dramatic, but if you have an illness with an autoimmune component (which Crohn's does), believe me, you know that feeling of complete betrayal by the one thing that is not supposed to fail: your body. With my body shutting down in various ways during my flare-up, all previous understanding of it went out the window. Forget sexual desire: the most amazing feeling I could imagine was not being in constant pain. I was spending all my time in bed, but not in a fun way. There were weird physical changes that happened with the onset of Crohn’s, and I wasn’t sure how it was going to change my sex life (if I was ever well enough to have one). And that previous love and acceptance of my body? Well, that was gone. I couldn't even stand to look at myself, or even be in this thing that was starting to feel foreign and causing me so much pain. I wished someone could babysit my body for a couple hours, so that I could finally just be, sans illness. Now my body is more of my home than ever before—I’ve had to do some renovations and upkeep, get it re-appraised, but it's not foreign, not in pain, and overall a great place to be. Over a year since diagnosis, and approximately a year since entering remission, I'm in a place that my flare-up self would have thought was impossible. I'm healthy, I'm happy, I have an amazing group of friends and a girlfriend that all support me, love me, and make shit jokes with me. I'm here, I'm queer, I'm somewhat chronically ill, but I'm rocking it.

From April 2016 Issue