Medical terminology for trans healthcare

I am finally enrolled in Kaiser Permanente’s transgender healthcare program. (Why I didn’t get enrolled when I first signed up for it is a mystery, but whatever.) Today I finally received my insurance form for submitting reimbursement claims for my hair removal.

It gave me a diagnostic code of F649 with an explanation of “Uncomfortable with one’s gender.”

This is… not great phrasing.

So I sent the care coordinator a note, because I can’t leave well enough alone:

I received the referral form today. Thank you.

If I might make a suggestion, on such forms it would be better if the diagnostic code F649 were accompanied with “Gender identity disorder” or, better yet, “Gender dysphoria” as specified by the DSM-5. The phrase “uncomfortable with one’s gender” neither appears in the ICD-10 nor is it accurate - I’m totally comfortable with my gender, I just am not comfortable with the effects of my natal sex characteristics that contradict it.

I realize that the medical field is still catching up with gender dysphoria and transgender care in general, but I would love to see the field use terminology that is universally suitable to the patients. Terminology matters and it makes a big difference in the level of comfort and the quality of the care received.

Thank you for your consideration.

Similarly, when I had the embolism last year and went to the hospital, the hospital updated their records for me and one of the notes on my account reads, “Surgically transgendered transsexual,” which is practically word salad at this point. This was placed there by the hematologist – who also was incredibly cavalier about my need for estrogen and was incredibly matter-of-fact about taking it away from me and talking about it as if I was taking it just for funsies or something. And that was when I suddenly started to cry uncontrollably, at 10 PM after a whole day of going through a battery of emergency procedures and harrowing tests after a morning where I nearly died.

Terminology matters. Understanding conditions matters. *Listening to the fucking patients matters.*

I mean I get that we can’t all be experts on everyone’s conditions and so on, but when you are treating a transgender patient, or are the fucking care coordinator for the transgender healthcare program maybe you should try to fucking understand transgender health and at least some of the fucking issues around it!

We are people, not just a diagnosis and not just a pile of “lifestyle choices.”

Update: The transgender care coordinator already responded to my feedback:

Thank you so much for this feedback. One- I whole heartedly agree with you. The code that goes in the referral is F64.9. I am not sure why or how it changes to the phrase “uncomfortable with one’s gender” once it gets processed. Two-I will be following up with this. Can I use your feedback directly? I will keep you updated on what I find out and how to improve this.

I feel a lot better now, and I hope that my message helps to enact change organizationally.

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