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something i’ve been thinking a lot about lately, after talking with a friend experiencing a trans-related health crisis that i have also experienced and wouldn’t have known even existed had other trans folx not talked openly about their experiences…
as a queer person, as a gender non-conforming person, as a trans person, as a person with mental illness(es) and chronic pain/fatigue…
many of us have to ‘doctor’ ourselves because mainstream medical professionals just don’t know that much about our conditions, identities, and bodies.
i have had to learn a lot about medicine in order to instruct doctors how to help my body.
i think this is not at all an isolated experience, doctoring oneself when the mainstream medical community is at a place of pathologization re an illness or identity rather than understanding and acceptance.
my ability to research medical issues will never be the same as a medical degree, but i have had exactly two PCPs in my time as a trans person on hormones (5+ years) who, for example, even understood that if my gender was listed as “female” on my paperwork, and they sent me for bloodwork to check my T levels, of course the blood lab would flag my T levels as “abnormal” because my T levels are not what the average lady human of any ilk wants floating around in their blood probably. but that is a different level of “abnormal” than if my T levels are actually too high for my trans masculine body. so i not only have memorized the rough guidelines for what my bloodwork needs to look like, but i have often educated my primary care doctors about what those levels need to look like.
i’m also incredibly lucky to have okay-ish health insurance so i can make some choices about my doctors and i can mostly afford at least doctor visits.
i also know i’m lucky that i’m able to read, understand, retain, and rearticulate complex medical concepts to my doctors & co. not everyone can (nor should they have to).
another good example is costochondritis - essentially the muscles and nerves in one’s chest area getting understandably pissed off in a very, very painful, sometimes heart-attack-mimicking way about being compressed by binding for many hours a day. most doctors would never suggest this as a potential cause for chest pain in trans masculine/gnc folx who bind because they’re just not that aware of issues that happen for trans bodies. my doctor rightfully referred me to a chest specialist — which i’ve gotta do to rule out actual heart issues, but turns out reading about icing my ribs and doing so when they’re painful has been more helpful than a referral to a chest specialist.
mental illness is similar. i don’t know how many times i’ve had to be like, “noooooope, i don’t think that my anxiety is causing me to have three days of vomiting and fever, thank you.” or “i’m not going to discuss my depression/ADD/HPV/what’s in my pants with you right now, i’m here because i clearly have an ear infection and am feeling miserable.”
even fibromyalgia — my doctor is wonderful and is very trans-hip (thank jesus), but as i’m getting tested to rule-out or rule-in various other conditions before settling on a fibro diagnosis, i’ve learned about the unreliability of some of the diagnostic bloodwork she ordered and also about other tests i’ll likely need to get done that i’m not sure have occurred to her in this case. i don’t expect any doctor to be superhuman and know everything but i do want doctors to know about, and discuss, the potential unreliability of test results they’re ordering.
i’ve also been thinking about the fact that so many of my queer and trans friends (myself included) are super into using naturopathic/herbal/spiritual remedies for body issues as they arise — sometimes/often in concert with mainstream medical solutions, sometimes as standalone care. because it gives us a way to take power back into our own hands with little interference from the medical community, who so often don’t have a clue about how to support our bodies’ needs, AND going to the doctor is sometimes wayyyy less accessible than getting some sliding-scale or free herbs to make a tea from. plus herbs often have less side effects and the earth rules etc. but this is also a symptom of problems with medicalization of everything.
there’s a difference between being a knowledgeable patient needing to exert a little advocacy (still a very hard thing to do) and being a person whose identities or medical experiences have been so marginalized/pathologized that doctors, who might be excellent doctors in other areas, don’t even have these concepts on their radar.