In summer 2018, I had surgery to reconstruct my bladder. Endometriosis had eaten away at it, causing excruciating pain and urinary dysfunction. My surgeon sent me home with a catheter that I’d need for almost two weeks. It’s hard to overstate the trauma of this; I cried almost every day. Sometimes the catheter malfunctioned, causing the bag to stop filling and the urine to back up into the tubing connected to my urethra. Other times, the catheter would come undone while I was sleeping and begin leaking. Once, I accidentally tugged on the catheter, and the pain was so mind-numbing that I couldn’t form coherent sentences.
Before my surgery, a shitty ex texted me; I didn’t want to see him again, so I thought nothing of it. But as I lay in bed with that plastic bag hanging below me, I replied. We were sexting within minutes. He told me that he’d dreamed about my tits, that I was sexy, and that the mere thought of me made him hard. Our conversation wasn’t deep or emotional, but it was precisely what I needed. Sickness makes a person’s world smaller and overwhelming, more still. There’s an endless cycle of doctors’ appointments, surgeries, and treatment plans that all promise to alleviate the pain; a profound sense of loss accompanies these new routines. In an act of compulsory self-defense, my mind shuttered itself from the pleasures I once took for granted. I craved simple joys, like the taste of foods that now made me sick, sitting in class without writhing in pain, and even the feeling of boredom—for my mind to quiet from calm instead of depression or fatigue.
Living with a chronic illness means involuntarily committing to self-preservation at all costs, abstaining from activities that might cause pain or canceling plans in order to store energy. “[It] complicates everything I do that should make me happy,” says Reina Sultan, a writer who, like me, has endometriosis. “I’m sometimes afraid to commit to a concert or a trip for fear that I might have a flare-up and be incapacitated in public or in an unfamiliar place.” At my sickest, one day of minor activity would demand up to a week of rest. I would stay home all weekend to prepare my body for a Monday class. Even with all these boundaries, I’d feel guilty whenever I sought pleasure. I whittled my life down to prove to everyone that I was a “good” sick person rather than an indulgent one. Then I had my first orgasm.
Following my first excision surgery—a year and a half before the second excision surgery where my bladder would be reconstructed—and intensive physical therapy, my organs unmoored from the disease ravaging them and my body gave me something that had always eluded me. Orgasming was like a glint of light at the bottom of a dark well. The circumference of my world loosened slightly, and in those small moments of ecstasy, my mind let go of the painful reality that had overtaken my life.
The Power of the Big O
Lara Parker, a deputy director at BuzzFeed and author of the forthcoming book Vagina Problems, lives with endometriosis and other forms of chronic pelvic pain and spent years unable to orgasm. Now, after years of physical therapy, she can cum, though it causes pain nearly every time. Still, she says orgasms are a critical part of her well-being. “Orgasming with my chronic pain feels like I have just completed a super marathon,” she says. “[It feels like] I am unstoppable. It’s a big ‘fuck you’ to my body.”
The significance of orgasming crystallized for me when I mentioned it to my physical therapist, Ann Levesque, during an appointment. She explained how important it was for me to connect positively with the part of my body that caused me so much anguish. Levesque says that orgasms can be restorative for pelvic-pain patients because orgasming helps them experience a “healing trust” that reconnects them with their need for sexual pleasure and intimacy.
“Living with chronic pelvic pain results in the body becoming vigilant and tightening muscles to protect from a flare-up, surgery, or sudden onset of pain,” she says. “Patients with chronic pelvic pain and pelvic-floor dysfunction often feel a deep emotional pain that leaves them feeling alone and wounded. This separateness creates a loss, leading to a disconnect from their pelvic area and their sexuality. Orgasms facilitate a letting go of muscular tension and past emotional hurts, affect our aura both around us and into the world, and promote a trust in the path of life.”
I soon began craving those feelings of vitality, power, freedom, and pleasure more and more. These new experiences became an axiomatic part of my healing; I resolved to be sluttier. Sometimes this meant spending entire freelance checks on crotchless underwear from Rihanna’s Savage X Fenty lingerie line. Other times, it was giving a blow job in the back seat of a car on a first date because dating reminded me I could feel something other than pain. It was getting in bed after having an IUD inserted and then sending a picture of my ass to three different men. Sometimes it’s texting the guy who tells me I’m pretty and brave. Sometimes it’s texting the guy who tells me he wants to fuck me from behind in the shower. Sometimes it’s a wholesome DM from the older guy who makes me wet when I think about him. These experiences remind me that I am more than the girl with a medical chart so heavy that it thuds when it lands on the desk.
“It feels good to be desired by a partner when I am bloated or after a hard pain week or after spending $1,000 on medical shit,” Sultan says. “It’s just so ordinary—almost blasé—compared to the whirlwind of chronic illness.” And orgasms, specifically, are an intrinsic part of this balance, she says. “[Orgasming] is about control in a loss of control. It’s one of the few times my body feels nothing but good.”
The Double-Edged Sword of Sexuality
Sexuality is treacherous to navigate, especially for those who aren’t straight white cis men, and these pitfalls can be especially hard for people living with chronic illnesses. Sultan says sex was “off-limits” in her immigrant Muslim family; this made it hard to discuss any type of birth control, and though she says her mom has come around to her using hormonal birth control to manage her pain, they’ve never discussed the sexual implications of the treatment. Similarly, Sultan doesn’t talk with her family about painful sex; those conversations happen only with her peers. “Any type of sexual freedom I’ve come to feel has had to come from my own learning,” she says.
The Mighty’s managing editor, Jordan Davidson, says the lack of representation of chronically ill people in media warped the way she understood desirability. “I remember watching A Walk to Remember—the first time I saw someone ill in media—and fixating on the line ‘I told you not to fall in love with me,’ which Mandy Moore, who has cancer, delivers to her love interest [played by] Shane West,” she says. “Even though my illnesses aren’t terminal, I felt like I should be warning people not to love me—as if my pain were contagious and they’d inherit [my] burdens.”
Pop culture depicts sick women either as medical mysteries—such as Dana Scully (Gillian Anderson) in The X-Files confounding doctors with a devastating and unexplainable cancer diagnosis—or as austere and foreboding, with stiff upper lips, as on HBO’s Sharp Objects, when Jackie O’Neill (Elizabeth Perkins) calmly recites a list of her illnesses without blinking: “I got endometriosis, pelvic-floor dysfunction. I got cysts, ic, ibs, and fibromyalgia,” she says, holding up pills for each. “It hurts is all.” O’Neill’s pain isn’t apparent throughout the show, but this narrative choice makes perfect sense; those of us with chronic illnesses fold these experiences inside ourselves, bury them where no one can see.
Pop culture sometimes succeeds in capturing the often difficult intersections of illness and sex: When both Sex and the City’s Samantha Jones (Kim Cattrall) and Jane the Virgin’s Xiomara De La Vega (Andrea Navedo) are diagnosed with breast cancer, they’re in relationships with supportive partners; these shows explore how complicated it is to navigate intimacy while sick. The women of Tennesee Williams’s plays have always been among my favorite in literature, but I’ve clung more tightly to them since my diagnosis: They’re all suffering with illness or abuse, but they’re also profoundly hungry for a loving touch.
Serafina Delle Rose in The Rose Tattoo becomes a recluse after the loss of her husband, but she brings passion to a torrid affair with a new and impulsive lover. The Glass Menagerie’s Laura Wingfield suffers at the hands of an overbearing mother and lives with a physical disability; she struggles to see herself as worthy of love but still wants it. In A Streetcar Named Desire, Blanche DuBois and Stella Kowalski are both abuse victims who are nevertheless acknowledged as sexual beings in need of and in search of pleasure. I look to Williams’s characters as reminders that, even in the messiness of my trauma, I am allowed to want these things too: passion, worthiness, pleasure. Such reminders are valuable in a world where women, sick or not, are rarely allowed to be sexual with impunity. Part of this sexual stifling stems from the misogynistic and archaic notion that pleasure for its own sake is hedonistic; it also comes from the cultural messaging that sick women must be martyrs to their health.
Preserving Our Pleasure
The stigmatization and weaponization of female pleasure forces women to exist on a binary of tropes: to be a slut or a prude. Women can’t be smart and love giving head or be good mothers and watch porn or be lawyers and take nude pictures. “Society tries everything in its power to disallow women from being sexual,” says Sultan. “So, if a woman has a chronic illness—especially one that is so closely tied with our [reproductive systems]—it almost seems wrong that we would want to be sexual.” Something about the trauma of endometriosis made me think, Fuck the pressure to be the perfect, least indulgent, and most careful sick person. I was spreading my legs for so many unfamiliar people in examination rooms and detailing my sex life to more doctors than I could keep track of; I needed to make those parts of me mine again.
The stories documented in clinical language, the symptoms retold in unfeeling precision—all sharing the same parts of my body as my sex life; speculums and probes where tongues and penises should go, rubber gloves and cold medical lube where warm hands and saliva should be. Why shouldn’t I lay claim to those spaces in my body and my life? Everyone else was. What started as a coping mechanism became a radical act of defiance. Being slutty reminded me that I’m a woman with needs beyond getting better. “Pain comes with so much more than just the physical experience of negative sensations,” says Davidson. “It causes depression, fatigue, and a host of other unpleasant side effects. If you don’t balance that out with something that brings you pleasure, you dwell in those miserable sensations.”
I was spreading my legs for so many unfamiliar people in examination rooms and detailing my sex life to more doctors than I could keep track of; I needed to make those parts of me mine again.
The irony is that there’s still pain in this freedom. Some of it is unique to living with a chronic illness, but some is simply from existing in a society that both devalues women’s sexuality and defines them by it. There’s the physical pain that still comes sometimes after sex or after an orgasm when the muscles and nerves in my body decide it has all been too much—it feels like a migraine in my pelvis; it feels like a punishment. There’s also the worry that someone will mistake my unapologetic position about sex as an invitation for disrespect or as a reason to disqualify me for a job. There’s the trauma of dealing with the men who make crude remarks about my health—who treat me poorly or violently—and the nagging anxiety that in seeking pleasure I am putting myself at risk.
Orgasms are sometimes called la petite mort (“the little death”) in French. It makes sense: There is perhaps no finer line than the one between pain and pleasure. Both are wrought with notions of control, release, and power. Maybe this is why sexual pleasure became such a productive and captivating outlet for my trauma; it matched the intensity of my suffering. At the same time, there’s perhaps no gulf greater than the one between these two sensations, pleasure and pain; one is an escape, and the other is something we yearn to escape from. One makes us cry out stop; the other makes us say don’t stop.