I’m in Nordstrom with my mom. When we run into someone I know from school, I feel immediately overcome with dread.
In a week, I’ll be having my first ablation surgery for endometriosis. I don’t know at the time that the surgery will only increase the pain that has gotten so bad that I can’t stand for a long period of time without getting dizzy. I find a chair and sit down while my mom chats. Though I’m sitting, the pain continues to build, and my head begins spinning. I look over at my mom, frantically trying to signal with my eyes that I’m going to pass out and we need to leave, but she has her back turned. I need to lie down. I want to interrupt their conversation to tell my mom, but I don’t want this relative stranger to pry—to ask questions about what’s happening with me and to know that I’m unwell. Instead, I send my mom a text, but the service in the store fucking sucks, so it won’t deliver.
Finally, the pain becomes unbearable; I walk up to my mom and she immediately senses something is wrong. She wraps up the conversation and we leave. When we get to the car, the message delivers, and her phone pings.
“Why didn’t you say something?”
It’s a year later, and I’m accompanying a professor I worked for at the time as she records a podcast episode with a well-known author. I survey the room; there’s a couch, a few hard chairs, and one or two tall stools. The night before, I was doubled over in pain; I was ovulating and my ovaries, which were suspended during my recent second surgery, my first excision—just six months after my failed ablation, to prevent them from adhering to my pelvic walls—were struggling. I want to make a good impression, and I want to be liked by the people in the room, so I don’t want to make a fuss. We file in and somehow, I draw a stool; I take a beat before asking, “Do you mind if I sit on the couch? I have an issue with my back.” I apologize profusely for the imposition, swallowing the lie, trying to make my condition smaller and smaller.
Our host—of course—quickly and warmly obliges my request.
The room is full and hot; I’m weeks out from my second excision; it’s my third major surgery—one a year and a half after my first excision—and I’m on painkillers. The friends I’m with know this, and I feel safe with them. They care for me; they know my body will be quick to weakness that night. Our friend’s art show is a can’t-miss event, but as I stand there with sweat collecting at my waist I wonder if I’ve bitten off more than I can chew. I start getting dizzy; a friend catches it in my face and suggests we sit down. I’m relieved that I didn’t have to say anything.
Later in the evening we’re still sitting, but my body’s stamina is waning; it’s like a reverse IV where I can feel every ounce of energy drain from my veins. Again, the panic sets in. How do I tell the people who’ve come to enjoy themselves that I no longer am, that in my head I am playing doomsday footage of me passing out and ruining the evening by being carried out on a stretcher? My friend turns to me and asks when I want to leave.
“I’m a little tired, maybe hitting my limit,” I say, practically short of breath from anxiety and hesitance.
“Okay,” she says matter-of-factly. “Me too, how’s five minutes? Can I get you a seltzer while we wait?”
I’m in a hotel bed with a man I don’t know very well; I am a year out from my last surgery and feeling better, but I’m not not all the way healed. I still struggle with bouts of pain, and my body tires quickly after years of illness. But he seems tender and nurturing, and for the first time in my dating life since getting sick, I allow it; I sink into the kindness instead of resisting it with dry humor and a false steeliness. My stomach gurgles as we lay side by side on our backs and prop ourselves up to watch TV.
“Is that your stomach?” he asks. I take a breath and consider lying, but I decide not to. “Yeah, because of everything that happened I have this condition where my pelvic muscles are tight—when they release my stomach makes that noise. It just means I’m relaxed and happy, and I feel good.”
“Oh, great,” he says. “Me too.” He leans over and kisses my shoulder; I feel like I’m about to cry.
When I was diagnosed with endometriosis in 2016, I didn’t know how to talk about it; this confusion was compounded by the intimate nature of the disease, the stigmatization of menstruation and reproductive health. Should I apologize to my teachers for burdening them with the thought that I have a uterus and ovaries? And that I bleed? Could I tell my male friends? What do I tell the acquaintance I ran into at the grocery store when they asked what’s happening in my life?
I decided to write my way through diagnosis; I needed an outlet to process it all. I’d draft essays in my head, in the shower, or driving in the car listening to melancholic music. I’d share stories about my sex life, my body image, the pain, and the toll it all took on me with thousands of people on Twitter, Facebook, and other social networks. And still, telling the person I’m on a date with or the friend I’m having drinks with that I’m in pain felt like an immovable hurdle.
Writing about personal experiences has been therapeutic for me because it helps me process what I’ve been through without facing it too closely. And so it would make sense that if I can share these deeply personal experiences and feelings with the internet, I should be able to turn to the person next to me and say, “I don’t feel well. I need to go home.” But there’s a safety in shouting into a void that can’t see you in person—that can’t watch you struggle to stand and cook, or burn your skin with heating pads, or watch your hands shake from pain as you swallow your meds. You’re a persona, not a person; it’s nonfiction but it’s not reality.
There’s an acute and near-indescribable vulnerability that comes with admitting to being in pain in real time. I know this conundrum intimately, and with the exception of a handful of occasions—when I’ve been in pain while at school, at work, or out with friends—nobody knows; the mere thought of someone seeing me scared and in need of help elicits a debilitating fear. Outside of my immediate family, I have never cried in front of another person about my pain, even when I needed to. Aside from my mom and dad and sister, I have never told someone how badly I’m suffering at the moment when the pain sets in, or how scared I am. I sit down, sweat, and fight lightheadedness; I press my cold hand to the back of my neck and take my jacket off. I nod along to whomever is talking to me, even though I really can’t hear anything they’re saying; I can feel my eyes glaze over and it’s as if I’m watching them through a glass pane.
After my endometriosis diagnosis, I would sometimes stay home simply because I was afraid my pain would escalate in the presence of others and I would have no choice but to ask for help. It was not the pain I was scared of—by then, pain was a constant in my life. I was afraid of someone else seeing me in pain. I don’t invest in the notion that being vulnerable is a form of weakness; in fact, I often wish I had the courage to speak up for myself in real time, to unburden myself and allow someone to help me carry the weight of this trauma. But suffering is intimate—the sight of it, the expression of it, the admission of it, the sharing of it. Privacy is a hot commodity in a body that demands attention. Doctors unashamedly ask us if deep penetration hurts. We spread our legs on exam tables and worry about our doctors thinking our landing strip is slutty. We’re incessantly asked about our periods, our sex lives, the possibly possibility of being pregnant, and whether we used protection the last time someone was inside us.
And so keeping those moments of pain secret was a simple indulgence in human nature. I desperately wanted a space of my own, to not have my most intimate experiences strewn out for others to see. I was making up for the exposure I had no say in, and protecting the parts of me that felt delicate and combustible. When you’re chronically ill, there’s an inner narrative that repeats on a loop: You are hard to love. You are operating at a deficit, so you don’t have much to offer to the people you love; it’s easy to overcompensate, to perform or to hide, even if it comes at the expense of your health. But the less-understood reality is that it takes monumental strength and acute vulnerability to allow someone to see you suffer, to experience your pain, and to allow them to watch you struggling—not through an online essay or a social-media post, but in front of their eyes.
Pain is traumatic, and it stays with us—burrowing into our brain, our nervous system, and our skin. It’s for all these reasons that disclosure can be such a catharsis, but the same reasons can also feel like defeat.
Allowing someone to care for you ceases to be a normal part of being in an intimate, loving relationship; instead, it becomes a reminder of everything you cannot do. Resisting care, then, allows us to invoke normalcy and to pretend: We fight through the pain, mostly to prove to ourselves that we’re just like everyone else. And while that can feel like a triumph, we’re really just hurting ourselves. Pain is traumatic, and it stays with us—burrowing into our brain, our nervous system, and our skin. It’s for all these reasons that disclosure can be such a catharsis, but the same reasons can also feel like defeat. I feel strong when I power through, and I wonder if that’s okay; I am proud of myself when I can put on a brave face, but sometimes I wonder who it’s really for.
In the hotel bed that night, I explained that I struggle with someone else taking care of me. It was the first time I’d said it out loud to another person; the words fell out of my mouth like loaded dice, clunky and uneven—unpracticed, unlike the years of explanations as to why I was fine. I don’t know why I was so quick to disclose to him; in that moment, he felt safe. Mostly, though, I was tired—not only in hours of the day, but in years. Tired of telling half-truths and outright lies to make my body seem palatable and desirable and strong enough and normal enough to be worthy of friends and lovers and work and play. Tired of putting on a masquerade of physical competence; tired of performing contentment for everyone but myself.
Sometimes I yearn to be a private person. I want to be mysterious, ambiguous, an enigma; to take back all the words I’ve written about my body, my vagina, my trauma, and my pain. But the decision to share my experiences was not entirely my own; this disease forced my hand and all those words were a catharsis. To take them back would also be to take back my healing. And when I consider my hesitance to ask for help in that moment; to tell a partner or a friend that I need to sit down or go home, I see the same culprit: a disease that has decided for me what so much of my life will look like, that has forced me to choose between privacy and ease. The struggle is not in my hesitance to disclose, but in deciphering when those decisions are mine and what they would look like if they were. It is in asking myself whether it’s more painful to hide or to admit. Do I feel stronger when I grit my teeth, or when I let myself cry? The answer is both: It depends, and I don’t know.