I was eleven years old when my mom first pointed out the black hairs growing from my chin. She was on the phone with a friend when she casually glanced at me and said, “You might want to pluck those, honey.”
At eleven, I was not just growing facial hair — my voice was deepening, my muscles growing more defined. I looked at other girls in my sixth grade class, saw how their bra straps fell down their shoulders, how their hips filled out their low-rise jeans. I became acutely aware that I was not built like them. I didn’t have breasts, I didn’t have my period, I didn’t even feel comfortable going outside for recess for fear the sun would reveal the stubble on my face.
At sixteen, it took a pediatrician, dermatologist, gynecologist, and finally an endocrinologist to figure out that I have non-classic Congenital Adrenal Hyperplasia.
Commonly referred to as CAH, Congenital Adrenal Hyperplasia is a genetic condition that affects the body’s ability to produce the stress hormone cortisol. As compensation for this lack of cortisol production, the adrenal gland overproduces testosterone.
Because my CAH variation is non-classic, the effects did not show until puberty. The surplus of testosterone is what caused my muscles to grow, my voice to drop, and my body to produce more hair.
Being diagnosed with CAH was simultaneously liberating and isolating. I finally understood that I was externally different from other girls because of my hormone differences. I began taking medication, grew breasts, got my first period at eighteen, and started to feel like a “normal girl.”
But these medically-induced changes didn’t erase the years of dysphoria and self-hatred I experienced as an adolescent. My doctor referred to my CAH as an an “incredibly rare medical condition,” and stressed that I might never meet another person with differences like mine. My body was an anomaly. My CAH was a secret to be kept at all costs. Although CAH comes with potentially life-threatening medical complications related to managing stress hormones, the clinical language offered to me did not include how the bodily differences caused by CAH affected my sense of self. I thought I had reached a healthy place of acceptance with my condition, until the fall of 2018.
I was finishing my last year of undergrad and had recently come out as queer. My sense of self was finally starting to stabilize. I was browsing YouTube when I came across a video by Pidgeon titled “Hi, I’m Intersex.” I had never heard the word “intersex.” Something about Pidgeon’s experience resonated with me in a way I couldn’t explain.
Pidgeon’s videos sent me into hours of research about intersex, where I discovered that intersex is an umbrella term for a variety of natural variations in the development of reproductive and sex anatomy. CAH is one of those variations because it causes hormonal and genital differences. In this moment, everything clicked: I am intersex. The sense of self I had worked so hard to stabilize instantly shattered, but the pieces it left have allowed me to rebuild an even more complex, nuanced, and radiant version of myself.
Discovering intersex terminology radically altered my relationship to my body and myself. My body is not broken by a medical condition, it is a beautiful variant on an ever-expansive spectrum. Claiming that, by actively identifying as intersex, allows me to slowly un-learn the shame and self-hatred I internalized as a child.
I desperately wish my doctor had told me I was intersex, and guided me towards resources to educate and empower this part of myself. It is impossible to separate my experience with CAH from my experiences with gender and sexuality, and the ways that my differences have shaped my understanding of myself in relation to others. Learning I am intersex has redefined my understanding of self love and self worth.
Being a queer intersex woman with CAH is a gift: it prompted me to think beyond a binary understandings of gender and sexuality. I can acknowledge and embrace the margins, spectrums, and intersections we exist within. Learning I am intersex positively transformed the trajectory of my life and allowed me to achieve love and success in ways my eleven year old self could never have imagined.
Sophia DeJesus-Sabella is an artist and intersex youth advocate for interACT.