You cannot trust me. That’s the first thing you need to know when I walk in the room. My breasts belay the inherent instability of my mind. The uterus beneath my skin. Hysterical.
This distrust of female gendered bodies is scientific fact. Male doctors are more likely to dictate conversations and behave paternalistically when they are speaking with female patients. Even female doctors have been conditioned to mistrust their female patients.
This body has always been different on the inside, even if it took decades for doctors to recognize this.
***
As a newborn I struggled to gain weight. My primary care provider dismissed my parents' concerns. But she looks so good! Age twelve, I am making things up. Fourteen, I am simply depressed. Seventeen, I am attention-seeking, overplaying growing pains. Eighteen, it’s normal for girls to believe themselves to be in pain. I am told I am okay. I am not okay.
Visiting the doctor is an act of translation. The feeling of ore melting into slag ingrained in my bones becomes a number on the 1-10 pain scale. The thick fuzzy fog of my brain becomes confusion, memory impairment on the symptom checklists of medical intake forms. As queer, feminist poet Adrienne Rich writes, “this is the oppressor’s language / yet I need to talk to you.”
Patients with rare diseases find themselves stuck in a system that under-researches, underfunds, and poorly understands their conditions. The government calls us orphans. But doctors exotify us. My transmasculine friend with pediatric Multiple Sclerosis feels like an alien in the doctor’s office. Another friend says she feels like a ghost, invisible and imaginary. My friend with Wilson’s Disease retells how his doctors paraded him around the ward when he was diagnosed.
***
I read a story of a woman with my disease online. Before her proper diagnosis, a specialist told her she had “Conversion Disorder,” in which sufferers convert childhood trauma into the imagining of physical pain. Coined by Freud, it is mostly used for women who have no physical evidence of their lived experience of pain. There is no scientific evidence such a condition exists.
In chronic illness, condition severity is too often measured with a pain scale. Yet, the pain of joint disease is not the pain of migraine, is not the pain of bowel disorder. The dimensions do not reflect the intensity of pain, the struggle of chronicity. Doctors see this scale as more scientific than patient descriptions of pain. Yet it is colored by bias—when reporting the same number, men are seen as in higher actual pain than women.
There is a violence in examinations, the vulnerability of sickness, and the supposed right of doctors to one’s body. My neurologist makes me feel like a bug in a display case. She pins me to the board and traces my edges. Labels and dates me. Touches me, without understanding what it is to be a butterfly. I am, afterall, a curiosity. Something she read about in an article one time. And therefore, she has earned the right to gawk at my body. I am a curio on the shelf.
***
I have a diagnosis now, after years of being dismissed. And yet, there is still disbelief. My father runs into my old pediatrician, who asks after me. He tells her I have been diagnosed with Ehlers Danlos Syndrome. She snorts. Yeah, she doesn’t have that.
Men are more likely to be given pain medications in the ER. Women get sedatives and anti-psychotics. Men’s pain is real. They are given accommodations and disability support. Women are supposed to rest, lose weight. I am as thin as a stick from constant nausea. My doctor puts me on fad diets, tells me to take Tylenol. A classmate tells me my pain is not real. Relax, meditate, try therapy.
And there is a vulnerability of having a female body at all. The pediatric rheumatologist is an old, white man. He hands me a hospital gown. Cover up. Leaves, perhaps to Google my condition. Comes back in. Stuffs another gown between my legs, his hand between my legs, cover up. Sticks his hand up the top of the gown to listen to my heart. Don’t worry, you’re covered up. His hand, on my breast. I stay silent. Perhaps it was an accident. Perhaps my body is his right.
***
I start lying at appointments, just little things. My current pain is always a six at the pain scale: serious, but not too serious. My maximum pain is always a non-hysterical eight, even though I feel my body shutting down and pray for death at my worst. I act hopeful, that I think they can ‘save’ me. I stop explaining through metaphor, stop correcting doctors when they misrepresent my body. I pretend to have made progress so they don’t become frustrated that my disease is untreatable and they are failing. I show them my body’s party tricks, and nod my head. My truth, who I am, cannot be believed, and so I become something else. I learn to turn my tangles of embodiment, identity, and experience into a statue that fits neatly on the shelves of a doctor’s mind. I become the model patient.
References
Free, C. A., Miller, M. M., Trost, Z., Wheelis, T., & Hirsh, A. T. (2015, April 16). Examining gender differences in pain treatment recommendations. IUPUI Research Day 2015, Indiana University.
Functional neurologic disorder. (n.d.). National Institute of Neurological Disorders and Stroke; National Institutes of Health. Retrieved November 20, 2022, from https://www.ninds.nih.gov/functional-neurologic-disorder
Hoffmann, D. E., & Tarzian, A. J. (2001). The girl who cried pain: A bias against women in the treatment of pain. The Journal of Law, Medicine & Ethics : A journal of the American Society of Law, Medicine & Ethics, 29(1), 13–27. https://doi.org/10.1111/j.1748-720x.2001.tb00037.x
Murphy, B. (2019, October 1). These medical specialties have the biggest gender imbalances. American Medical Association; American Medical Association. https://www.ama-assn.org/medical-students/specialty-profiles/these-medical-specialties-have-biggest-gender-imbalances
Peck, B. M., & Conner, S. (2011). Talking with me or talking at me? The impact of status characteristics on doctor-patient interaction. Sociological Perspectives, 54(4), 547–567. https://doi.org/10.1525/sop.2011.54.4.547
Rich, A. (1971). The burning of paper instead of children. In The Will to Change: Poems 1968-1970. Norton.
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