Thoughts on getting a diagnosis

Last week in therapy, I talked briefly about planning ahead for top surgery one day.  I said that I might want to do this, maybe as early as this coming summer.  That’s the most concrete thing I’ve ever said about the subject.  She asked what some first steps would be, and I replied, “look into whether it would be covered by my insurance.”  That’s kinda something that would really help frame it in my mind, the answer to that…  She asked me how I’d do that, and I really floundered with the actual words I would use if I were for real making a phone call to insurance people.

It’s too sensitive and too hypothetical in my mind still, and I could barely even say, “female to male chest reconstruction surgery” out loud, just to her.  She got it and said, “what you could do is find out the code for that type of surgery, and when you make the call, you can just ask about the code as opposed to using the words.”  I said, ok, yes, I think I could do that.  She said she would look it up for me and email me the code.

She ended up finding out a ton more info than just the code, on her own.  She said certain info led to more questions and she ended up just calling.  Basically, she got all the information for me, for which I am so grateful because it would have felt too emotional for me to do on my own, at this time.  It is NOT covered by insurance.  I’m not surprised.  I told her that doesn’t change much – I’m still considering it.

We briefly talked about it again this week, and about gender identity in general.  She said that some surgeons require a diagnosis of gender dysphoria for X amount of time in advance (glad she is doing the relevant research!), and should she be diagnosing me with that?  This turned into a heated discussion (on my end), with the conclusion that I do not care about that, but I am OK with that, if it’s in order to help along a process.  And that, again, I don’t really care to know what she is doing in that regard.

The idea of being diagnosed with a mental health label is contentious in my mind, and she knows this.  She gets it.  I’ll be writing about this further in my next blog post, probably next week.  A teaser for what is to come:  I was misdiagnosed with bipolar disorder at the age of 17, and held onto that belief strongly for about 6 or so years.  That’s a heavy duty label to be grappling with, unnecessarily.

My therapist is not a gender therapist, but she is doing right by me more than any other therapist I’ve ever had (and some have been gender therapists).  There was a time where I thought – we both thought – I would need to go to a different therapist in order to progress with any medical transition steps (I did this in order to access testosterone, kinda unnecessarily in the end).  I don’t think that anymore.  Why can’t she be that person?  I think she is getting on board with, she can be that person.  We concluded recently that a big goal for therapy is to make some progress with transgender-related issues and decisions, and I said I would send her some more general information to get her started.  I sent her the following resources:

Genderqueers, Gender Rebels, and OtherWise in the National Transgender Discrimination Survey

Trans Research Blog – a compilation of what is out there

Trans Bodies, Trans Selves – a great book to have on hand

Anyone have other essential resources?

More than once, she has said, where is the data?  Where is the research that says this and this and this are best practices?  And I just keep responding, There needs to be more research.  And I just keep shrugging.  IT DOES NOT EXIST.  (Yet.)  I don’t know whether she believed me initially, but she may be starting to realize it by now.  It’s maddening how little is out there.

Do I think that I have gender dysphoria?  Whoa.  That is going to take way too long to pull apart right now.  That’s probably for a future post!  Do I mind being diagnosed with that for the purposes of having a wider selection of surgeons to choose from if I do decide to move forward with top surgery?  Not at all!  It’s close enough.  (Although I do strongly, strongly wish more surgeons would get on board with the informed consent model.)

Edit:  Now that I think about it, I’m sure I’ve already been diagnosed with gender dysphoria by my primary care physician (for my testosterone prescription) and probably at least one other therapist.  To me, it all feels so arbitrary.


25 Comments on “Thoughts on getting a diagnosis”

  1. In my pursuit to understand how to work with the trans population better, not trusting my gut instinct as being part of the population, the Gender Identity Center in Denver told me the standard book to help therapists work with this pop is Transgender Emergence: Therapeutic guidelines for working with gender variant people and their families. By Arlene Istar Lev. It is very thorough and easy to read. And of course, if she hasn’t already found the Harry Benjamin Standard of Care – that lays the foundation that the medical/therapy community need to follow in treating gender variant individuals seeking tx. I have a pdf copy of it if you would like me to email it to you let me know.

    I am very glad you and your therapist are willing to figure this out together. That she is open to learning. It isn’t always easy to find someone we connect with and starting over can be stressful!! Hope this helps.

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  2. honest11 says:

    My surgeon required a letter from my therapist… it didn’t need to include a diagnosis but just basically needed to inform them that you were not going to regret it lol. However, in order to bill my insurance for therapy sessions or perhaps cover hormone therapy…my therapist needed to make a diagnosis. Her diagnosis was gender dysphoria. I remember looking at the words “gender dysphoria” and kind of was taken back by those words for a bit… accepting it all is quite a process. However, they are just words… you are not your diagnosis… you are just you 🙂

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  3. George Davis says:

    Thanks for the link. I wish I had more studies up, I’m still working on it.

    So far, I have not found scientific studies of non-binary gender identities. The research that clinics have done in this area has been about people who want to change from men to women or vice versa.

    Basically, I don’t think there are any studies of what works for people with non-binary gender identities.

    These are links to articles about non-binary gender. They seem to be behind pay walls, although sometimes reading an abstract tells you something. I don’t know how helpful they would be to your therapist, but this is what I could find.

    http://sexualities.sagepub.com/content/17/1-2/63.abstract
    http://vc.bridgew.edu/jiws/vol13/iss6/6/
    http://gradworks.umi.com/34/17/3417137.html
    http://search.proquest.com/docview/304533091
    http://heinonline.org/HOL/LandingPage?handle=hein.journals/alterlj38&div=47&id=&page=

    I wish I had better information.

    I want to stress that we don’t know what medical procedures work for people with non-binary gender identities. Nobody has studied it yet.

    This is definitely an area where someone should be following-up with people who’ve had surgery to see what happens next.

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  4. Jamie Ray says:

    I wrote the letter for my therapist. If you want to take a look at it, I can email you a copy.
    I also had that “world’s most awkward conversation” with my insurance company. I had my surgeon send them the CPT codes. They have not rejected my request for pre-approval yet…but they haven’t given a go ahead either. Fingers crossed, but I have the whole amount sitting in the bank ready to go.

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  5. Akiva says:

    I second giving her the latest WPATH standards of care (and maybe check it out yourself)—it’s available free online somewhere, though I don’t have the link on me right now. I read the whole thing when I thought I might need a letter for top surgery and I was really impressed by its depth and how well it allowed for non-binary transitioners. (I ended up going with a surgeon who didn’t require a letter at all, at the cost of not providing any of the insurance paperwork, so I had to pay entirely out of pocket.)

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    • janitorqueer says:

      Oh yeah, I did find it at one point online (just read a couple small sections at the time). Will send that to her. Out of curiosity – would your insurance have covered surgery from certain surgeons – you just decided to go with one who didn’t take insurance?

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      • Akiva says:

        Yeah, which is pretty great. However, I would have had to go to a local surgeon whose results I didn’t prefer and have DI instead of getting the procedure I’d decided on (T-anchor).

        I might want a revision at some point, and I’m vaguely thinking of trying to go through insurance for that. I have *no* idea how it would work. But, now that my chest is so much smaller I’d be more confident about the local surgeon (who is actually one of the best in the country if you have a small chest).

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      • caedocyon says:

        (Also, I was still very ambivalent about having surgery at the time I started saving, and in some ways I needed the time it would take to save all the money—I think it ended up being 3-4 years—and the sacrifice it represented to build my confidence to the point where I could do it. That’s me being a weirdo, of course, and I’m grateful that this approach was financially possible for me!)

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  6. Where I live, we need a diagnosis of gender dysphoria (by a gender therapist, not just your GP) in order to even get a prescription for T. We’ve only two gender clinics in the country, and there are waiting lists. Once you enter the diagnostic phase, it take around six months (or longer!) to get your official diagnosis.
    Also, I got lectured by a specialist not long ago for just mentioning that I wanted to be rid of my boobs. The woman insisted that it was unethical. It made me so angry!
    Anyway, sounds like you found yourself a good therapist to work with. 🙂

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    • janitorqueer says:

      It’s so interesting how different countries have vastly different approaches…
      Sorry to hear about the incident with a specialist – she should know better!
      Out of curiosity, are the costs covered or partly covered for transitioning in your country?

      Liked by 1 person

      • At the moment, the costs are still covered. But a lot of things are changing here, and the gender clinic even has had to close its doors to new transgenders for a couple of months last year, because the state stopped subsidising the clinic.

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  7. johnmitchk says:

    My gender clinic has a team consisting of a nurse, a social worker, a psychiatrist and a psychologist working on the diagnosis. They seem very open about and even keen on tailoring the medical treatment for non-binary people. I’m not sure if it’s because of research or just simple experience they’ve gathered over the years. I don’t know if the attitude is the same at the other clinic in my country. I’ve heard their staff changes a lot.

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    • janitorqueer says:

      That’s awesome that your gender clinic is open to non-binary identities. I feel like things are really changing in that regard. And I always feel suspicious of a place that has a fast turnover of staff. Glad you’re going to the one that is seemingly more consistent!

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  8. micah says:

    First, your therapist sounds amazing. She’s a keeper!

    There isn’t a lot of research about trans populations in general, much less non-binary people.

    But the necessity for research is based on the fallacy that science is the ultimate truth – gender, your identity (what is identity even?), sense of self, feelings, what have you, are not really true until they have been “proven” by “science.” Until then, what? None of your experiences are real? Your (dis)satisfaction, your desires, your gender, and the steps you think you need to take, are ultimately things you experience, feel, decide upon, and that is your truth.

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    • janitorqueer says:

      That’s a great outlook. If I say, “I want to do this,” or “I think I’m going in this direction,” no amount of research or literature is going to prove or disprove whether that’s right for me.

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  9. jzilla says:

    I’ve recently gone through the run around involved in trying to find out what is covered by health insurance. An acquaintance told me I was asking the wrong questions – don’t ask if it is covered, ask if SRS is excluded.

    It is quite a frustrating process, but try not to get too irritated (easier said than done – I was close to throwing things during my last unproductive phone call) !

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    • janitorqueer says:

      Hey jzilla! yeah, my therapist told me something similar – instead of looking at what’s covered, you have to go to the “exclusions” sections…
      Looks like my insurance does not cover any type of surgery within this genre…
      Really hope you’re able to smoothly navigate through. No one needs that type of stress. These answers should be easy to come by!

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  10. Naomhan says:

    I think this is a really interesting topic. Where I live, anyone wanting to take hormones or to have surgery has to have a letter that says that they are “a female to male transsexual” or “a male to female transsexual” before they can access any services. I’m torn at the moment because part of me thinks “what the hell, just go along with the system to get access to the services” and another part of me thinks “what utter rubbish – why do I have to be a ftm transsexual before I can receive testosterone or access top surgery”. It’s an argument that I’m battling with at the moment, not helped by the fact that all other stories of non-binary transitions on the NHS have been met with literally years of delay (9 years was the worst I’ve heard of). I’m trying to decide whether I have the energy to fight the system legally, for the benefit of those who might follow, or if I should just lie down and let them roll over me. Being who I am, I think I’ll go with the fight, but we’ll see. I’m already counting down the months (6 minimum) before I can be referred for top surgery, so it depends on whether I’m willing to jeopardise that.

    Also, I think “Top Surgery” is a much nicer way to say it than ““female to male chest reconstruction surgery”! Much less sex specific!! Good luck with it, your therapist sounds fantastic!

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    • janitorqueer says:

      I agree about the phrase, “top surgery.” I can say that; no problem! And dang, your moral dilemma is really massive! I think that’s great that you may have the energy for that. Make sure you take care of yourself along the way!!!

      Even though things are not standardized and many things need to be paid for out-of-pocket (depending) here in the states, I am glad for the not so cut-and–dry path options here. It makes it feel like moving forward at my own rate and on my own terms is 100% do-able, even if it is expensive! Good luck to you – I’ll want to hear all about it along the way…

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