My Pain is Personal

Note from Editor-In-Chief Denarii Grace and Director Allexa Laycock:

We invite you to read our offering of an introduction to contextualize Maya’s personal narrative with the many methods of engaging with disability rights and disability justice. Our team, our storytellers, and our audience are all in different places with our disabled identities and self advocacy. While we ask that all blog writers self-identify as disabled to write for us, we know that identifying as disabled is not an option for all, particularly Black disabled people.

From author and activist Sami Schalk’s Black Disability Politics, “…the racism of white disabled people and white-dominated disability rights organizations as well as the racism and classism of medical, psychiatric, and legal systems in the United States have made identifying with disability difficult to impossible for many Black people.” The process of identifying as disabled often is a holistic one, taking into account personal history, community messaging, engagement with inaccessible medical systems, and an evolution in self-awareness. 

Also in Black Disability Politics, Schalk asserts that “This quality of being holistic also applies to the tactics of Black disability politics. Black disability politics focus simultaneously on micro (individual and community) and macro (societal, national, and international) change.” Maya’s piece is an example of the micro focus of disability politics. Maya’s personal journey through religion, sex, health, and self-care gives an intimate portrait of a holistic evolution of disability identity.

CONTENT NOTE: suicide ideation, religious trauma

.

.

.

.

.

.

.

.

.

.

.

.

I grew up with the religious messaging that sex was a means to produce children; the only pleasure allowed within sex is within state-sanctioned marriage. Anything that resulted in orgasm before marriage was sinful. So as a form of self-preservation, I wore the purity ring my dad gave me, viewed masturbation as an addiction, and kept my intimacy with romantic partners as conservative as possible. That level of self-preservation was so anxiety- and stress-inducing that my body was closed off. 

I had been feeling pain noticeable to me since early August 2023. My first noticeable symptom was a sharpness on my right side that I’d never felt before. It wasn’t until late August that I received an endometriosis diagnosis. 

I experience cramps caused by large cysts on my uterus. They’ve apparently been alternating from my right side to my left side in the months since I was diagnosed. Along with that, I experience bladder changes that cause me to pee more than usual. It’s debatable, though, whether or not this physical agony is what has been wreaking the most havoc…or the emotional agony.

Unfortunately, early in my chronic pain journey, my condition activated suicidal ideation. I have felt suicidal ideation before, but not in a way inherently connected to my body. I didn’t expect that and, most importantly, I didn’t want it.  

Kaveh Akbar wrote in his novel Martyr! about how what if everything one was supposed to do to heal just “lead back to the same shame?” I had been working on my mental health for years, including my suicidal ideation. I’m always learning and relearning that healing is a non-linear process, but it was helpful when it was the same process I was dealing with over and over again. Now there was this physical condition that shifted my healing process, that was so new and undesired. Shame was only compounded from there.

Having that feeling again, in this context, made me sad. I know how frustrating and problematic the narrative is that abled-bodied people make about disability and suicide. “Oof, if I were in your shoes, I’d kill myself.” It’s gross. 

I’m not in a period of my life anymore where I have the desire to actively end my life. At the same time, I know I wanted to write about this because it affected me. I’m the one who is in pain and this is how I’ve been dealing with it. But it’s also been difficult to write about. (At the time of writing this, I missed two deadlines for when this piece was due because it was hard to write about.)

Pre-diagnosis, I’ve always said the phrase “being alive is hard.” Post-diagnosis, particularly when I’m in a significant amount of pain for more than a week, I would say “being alive is a scam.” It was one thing to recognize the universal condition of life being hard due to the systems and trauma that cause demise of our mental health. It was another thing to have a physical ailment completely out of my control and prevention to dictate my liveliness. 

Endometriosis created a negative self-talk about my sexuality. “You wouldn’t be like this if you hadn’t tried to engage in penetrative sex with your partner.” “You wouldn’t be like this if your pelvic floor wasn’t so fucked up.” “You wouldn’t be like this if you didn’t have all of these contradictory desires in your body in the first place.” 

Early in my diagnosis, sex with my partner of five years was difficult when still in physical agony. I felt like my partner was afraid to touch me when, in reality, I kept internalizing that I didn’t deserve to be touched. Illogical thoughts soon emerged, like “I’m in pain because of my sinning; sinners don’t deserve to be touched.” 

I have experienced illogical or intrusive thoughts during intimate moments with my partner—and in sensual though not sexual intimate moments with people before I met my partner—but not in a way that was inherently connected to bodily hurt. They were thoughts about my self-worth, how much I was willing or unwilling to “put out” while living in a body assigned female at birth.

It also doesn’t help that able-bodied people perpetuated the narrative of disability equating wrongness in our predominantly Christian society. I experienced this messaging when going to church and the pastor would say one’s disability was a sign of “brokenness” or “missing the mark” (which was often used as the literal definition of the word “sin.”) I was only able to start combating these thoughts by going to therapy, expanding my knowledge in consent education, and writing more and more about how I want to articulate sex.

Although I’m no longer waiting until marriage like I was raised to believe, I believe in maintaining open and honest communication in all contexts. I am improving my communication with my partner, and I’m grateful to my therapist for helping me unpack so much so that I can say kinder words to myself, even while dealing with my chronic discomfort. It’s still an ongoing journey to unpack it all. 

In addition, I’ve been taking a daily progesterone pill, buspirone, clonidine, and duloxetine, which helps my mood and the cysts. Sleeping with extra pillows, letting myself cry and rest more has also helped.  
Finally, hearing from people in my life or their loved ones dealing with endometriosis has been the most helpful. Hearing how they needed to be kind to themselves while pacing during their day, despite messaging around whether or not their pain is real. It has helped remind me that my pain is real, and I am entitled to care for myself however I need to in that pain.

---

Maya Williams (ey/they/she) is a religious Black multiracial nonbinary suicide survivor who served as Portland’s poet laureate from 2021-2024. Ey is published in venues such as Black Girl Nerds, The Daily Beast, Stylist, Rooted in Rights, and more. You can find Maya’s two poetry collections and published essays at eir website.