Read this story only if you agree with the disclaimer!
I was born as a man. My diagnostic phase at VUmc began in October 2006; I was 36 years old then. I also have diabetes and I knew that the insulin I was taking was a hormone too. Because my treatment for diabetes also took place at the VU and I was very happy about that, I decided that the VU would be the best place for me to get hormones. I had heard a lot about the problems around the diagnostic phase at VUmc, but I had decided to ignore that. I was convinced that the problems would not be as severe in my case as what I had heard from others: if the VU would hear how carefully I was working on my own transition process there wouldn’t be any problem to get the right help at the right time.
One of the things that clearly proved my meticulousness was the fact that I worked on my transition with a coach with a psychosynthetic background and that I carefully planned my steps, waiting as long as possible before proceeding to each next step. I had taken the decision to take each step only at the moment there -really- was on other option left. By proceeding in this way, I could be sure that – should I ever have regrets later – I could never blame myself for going too fast. Based on this idea I had taken the following steps between the beginning of 2004 and October 2006:
- I bought a skirt and started wearing it indoors
- I bought breast prosthesis and started wearing them indoors
- I bought women’s tops and blouses and started wearing them indoors
- I came out to my parents and to my sister
- I started epilation of facial hair
- I started epilation of hair on arms and legs
- I started wearing women's clothes outdoors
- I visited a nearby city (by bus), wearing women's clothes
- I started using make-up
- I came out at work
- I started wearing earrings
- I started living as a women 24 hours per day, 7 days per week (24/7)
The step to start living as a woman 24/7 was consciously taken before starting the diagnostic process. I knew that the VU would require me to start living 24/7 as a woman within three months after starting hormones, and they would stop supplying hormones if I failed to comply. I didn’t agree with the fact that the VU would determine at which moment I would have to start living as a woman 24/7. In retrospect it would have been better for me if there hadn’t been a diagnostic phase and I could have reversed the order of the steps of living 24/7 as a woman and starting the hormone therapy.
Intake, October 2006
When I signed up, an appointment for the intake was made immediately. At the time, the intake was done by a hormone expert (*). I was lucky: this man worked at the VU both as a diabetes care provider and in the gender team. I have indicated clearly that I didn’t need a psychologist, because I had my psychosynthesis coach who had guided me during my entire process. This worked very well: she helped me not to get ahead of myself and she also helped me to go ahead when I fear to overcome a threshold. I knew what I wanted, all I needed were hormones.
During the intake I indicated that I felt somewhere between man and woman, too feminine to be a man and too male to be a woman. My request for help was for hormone therapy under medical supervision. As far as I could see, I wouldn’t need gender reassignment surgery. But there had been a time when I thought the same about hormones. I knew the pros and cons of both anti-testosterone medication and of estrogens.
The endocrinologist had no problem with me starting the diagnostic phase, as long as I wouldn’t totally rule out the possibility of gender reassignment surgery in advance (**).
(*) Later the VU has changed this procedure: the intake is now done by a psychologist.
(**) Later the VU has changed this policy: at the moment it is also possible to start with hormones if you do rule out the necessity for gender surgery.
Two sessions in December 2006 and January in 2007
Because I had indicated that my feelings were somewhere between male and female, I was referred to a psychologist who was investigating people with feelings between man and woman. She started the first session by telling me that these were completely non-committal sessions, both for the VU and for me. This meant that I could stop these meetings at any time I wanted and I wasn’t required to have any follow-up consultations if I didn’t want to. It also meant that the VU wasn’t required to help me with hormones. That didn’t correspond with my agreement with the endocrinologist. Fortunately it was also documented in my file that the next step would be the diagnostic phase. The hospital staff did try to find this man during the first session, but they didn’t succeed in that.
In the second session she told me that she had spoken with the hormone expert and that she was willing to do the normal diagnostic phase with me. Apart from this difference of opinion, the sessions took place in a pleasurable way, I had the feeling she was asking good questions and was really interested. I felt reassured that the diagnostic phase at VUmc would not be a big problem.
First diagnostic session in May 2007
In May 2007 I had the first diagnostic session. This was a meeting with the same psychologist who had also done the investigation in December/January. In this session she indicated that the diagnostic phase at the VU would consist of at least 6 sessions, with an additional session for filling in questionnaires. She estimated that I would get my hormones in December 2007 or later.
I immediately told her that would be way too late: in my daily life I often felt intense stabs of pain in my abdomen when I saw a woman. Although I didn’t worry too much about that (the same thing had occurred prior to each previous step in my transition), it was a strong indication that my jealousy was beginning to grow too big and that it was necessarily to rapidly proceed to the next step in my transition.
But my psychologist was inexorable: it was important to proceed with the greatest prudence. At the end of the session the follow-up consultations were planned: once every four weeks, sometimes with a longer interval due to her vacation in July and her absence during the WPATH in September.
Filling the questionnaires, June 2007
In June I filled out the questionnaires under supervision of the psychologist’s assistant. In a short personal conversation (approx. 15 minutes) I did not only answer his questions, but also indicated that on a warm afternoon at the end of May I experienced 250-300 intense stabs of pain in my abdomen when I saw women. In my opinion this was unbearable, I asked him to help me get a prescription for hormones immediately.
This clearly shocked him. But my own psychologist was absent, he said he would report this to her. He did tell me that some doctors were of the opinion that it was a good thing transgender people get multiple months to calmly reconsider their decision. I then asked him for an appointment with the doctors who were of that opinion: I would have liked to tell them what had happened to me in May and why it was a mistake in my specific case to wait any longer. I never got that appointment.
Second diagnostic session in August 2007
In this session I also told about what happened to me at the end of May. I also had to stay inside some weekends during that summer, because my jealousy towards women had become too overwhelming.
My psychologist seemed to understand why hormones were necessary for me now, but she could not do anything but work according to the protocol. She often spoke in understatements, and she literally said "the protocol is not ideal". This made me furious: apparently following a protocol was more important than good quality care for transgender people. She could understand my frustration, but she couldn’t do anything about it.
I asked her if there was perhaps a possibility for a faster diagnostic process from the independent psychologist Tanja van Hengel. Tanja had once spoken about the possibility to do the diagnostic in four sessions of one and a half hour each and with one session per week to reduce the total lead time to one month. After that Tanja would be able to help me get the hormones via a hormone expert outside the VU. That way my VU-psychologist would be able to do her diagnostic at her own pace, while I would get the hormones I needed so badly more quickly. Later, when the VU-psychologist had completed her investigation, I would get the hormones via the VU instead. My psychologist did not agree with this: if I did that, she would stop my process at the VU. The reason for this was that the waiting list at the VU was already way too long and that would become even worse if patients would follow more than one track at a time.
Third diagnostic session in September 2007
In the intervening month my situation deteriorated. When I was watching the news on TV (presented by Sacha de Boer), at the end of the news bulletin I had no idea which items had been discussed, because I was too envious of the female newsreader. One time I was watching a crime thriller with a scene where a woman was on the dissecting table in the morgue. I was watching very tensely and I thought "do not cut in that gorgeous body, I still have a very good use for it! If I put my body on that dissecting table, I could live on in that other body!". The intensity of this feeling is beyond description, I thought I was going crazy. I really needed a prescription for hormones NOW.
My psychologist told me she had discussed my case in the gender team, but her colleagues were of the opinion there was no other possibility than following the protocol. She literally said that "in the gender team things sometimes were handled in a Stalinist way". When I asked her who was the Stalin on the team, because I would like to personally tell this person why I needed hormones NOW, she remained silent. And even today I still don’t know who it was; there has never been a meeting.
After that incident the atmosphere was very icy. In May and June I had still been quite talkative, thinking "all the information I give now may have the result fewer sessions will be needed". I found out this tactic did not work: she repeatedly asked for information I had given to her already. I began with a new tactic: I made sure I answered every question with only two words, hoping she would soon have asked all her questions so that she couldn’t do anything but give permission for prescribing the hormones more quickly. This made her quite desperate and she told me that she could not work this way. She could understand why I was so angry, but if she wasn’t able to work in her own way, I would never get hormones. I took a new approach and started given somewhat longer answers again, but never again as elaborate as in May and June.
This made the atmosphere improve again. The psychologist asked me if she could ask me questions about my sexual fantasies. I thought we had just put aside one point of disagreement, but I could feel a new controversy coming up. I agreed to her asking these questions. After answering all her questions, I asked her why she wanted to know about this: my need for hormones was due to problems in my daily live, not to my sexual fantasies. She answered that there were theories according to which the self-image in sexual fantasies corresponded with the desired result from transition treatments.
Fourth diagnostic session in October 2007
I realized my psychologist would never be able to find out what my sexual fantasies really were. I needed hormones, that was more important than correct information in the VU files. So I began this conversation by telling her that I found what she had told me in the previous session about sexual fantasies very interesting and that I was now noticing a shift in my self-image. In my self-image I now often felt a kind of hole at the bottom of my body, although I would not go as far as calling it a vagina. And it also didn’t happen every time, but I thought that it was well worth mentioning. It looked like this information made my psychologist very happy.
But she also told me that my parents or my sister would have to come and speak with her too. I was (and am) strongly against that for several reasons. First of all I didn’t want to make these people travel for 250 kilometers (and back) for a conversation that would last for one hour. My sister lives closer to the hospital (100 km), but at the time she was unable to travel long distances due to personal circumstances.
The most important reason I didn’t mention at that time. My main reason was that I knew that some transgender people get regrets about their transition. I guess that all transgender people are, during the diagnostic phase, convinced that they will not be one of the people who have regrets later. So there would be two possibilities:
1) My family might completely agree with me I needed hormones immediately. In that case, if I ever were to get regrets, they would have regrets about what they had said too.
2) My family might be hesitant or negative about the idea I needed hormones immediately. If the VU would use this as supporting evidence for refusing me a prescription for hormones, I would hate my family for that.
I did know I was in a difficult position. The VU’s patient information flyer clearly stated: "In the diagnostic phase, the psychologist may need to speak with other important persons from your close environment." (*) In the intervening weeks I thought about how I could best handle this.
(*) This is still in the patient information flyers, see here.
Fifth diagnostic session in November 2007
I had brought a sheet of paper carrying the names, addresses and phone numbers of my parents, my sister and my coach. I told the psychologist that I wouldn’t mind if she would speak with my coach. I had discussed that possibility with my coach in advance. But I still didn’t want her to speak with my parents or my sister. On the other hand I -really- needed the hormones, so if a talk with my parents or my sister was a requirement for getting hormones, I would agree under protest. She could contact them herself now, as she had the addresses and the telephone numbers. The reason behind this was that it would make very clear to my psychologist, my parents, and my sister that the person requesting the interview was my psychologist, not me.
Now my psychologist was faced with a dilemma. On one hand it was not the usual procedure for the psychologist to contact family members of their patients. And it would be a strange thing to do indeed. After all, there are privacy laws stating that only the patient can decide who can come along to the consulting room. On the other hand the VU-protocol did state that she had to speak with these people. So she tried in several ways, both in October and in November, to make me say I would invite my family myself. I didn’t give in to that and eventually she decided that it wasn’t necessary to see my parents or my sister.
Sixth diagnostic session in December 2007
The team of psychologists had given permission for the hormone therapy, but now the gender team as a whole was blocking it. The hormone expert I had spoken with earlier, was of the opinion that my blood glucose levels should be better adjusted before he could give me a subscription for hormones.
This made me very angry: why hadn’t they told me this during the intake in October 2006? My psychologist tried to find it in my file, but she could not find that my hormone expert had spoken about this, so she sided with me. But there was nothing she could do, except help me to get an appointment with the hormone expert.
Meeting with the hormone expert, December 24th 2007
The day before Christmas I had a talk with the hormone expert. He explained to me that there was no medical reason to not prescribe hormones with a bad diabetes adjustment: Insulin and sex hormones do not impact each other. But because I hadn’t ruled out a gender operation and these glucose levels were too high for such an operation, he didn’t want to prescribe the hormones. He was convinced he had told me about this. Not that he could remember this himself, but it was an issue that was always discussed in intakes, so he was sure we must have spoken about it. The fact that it was not to be found in my file didn’t change anything at all.
I have talked and talked, I really tried my best. I was convinced the diabetes adjustment had not been mentioned during the intake. And I didn’t think it was reasonable to deny me, who just needed a hormone therapy and no gender operation (yet), the right to get a prescription for hormones based on the rules for gender reassignment surgery. The reason behind this turned out to be that in case I eventually would need gender reassignment surgery I might end up having to live in a half-male, half-female body. The hormone specialist thought it would be better to have either a fully male body, or a fully female body. (*)
I have explained to him what happened in May, and how things had deteriorated during summer, that I couldn’t watch TV or detective series any more, but he wasn’t interested at all. Improving the blood glucose levels (which were not his direct responsibility, because another doctor was working with me in the diabetes department) was more important to him than his own responsibility, the hormone treatments for transgender people. For me Christmas 2007 was totally screwed up. I cancelled all social appointments for the holiday season because I was furious and I didn’t want to bother other people with my frustrated feelings.
(*) Although the VU is now more open to non-binary treatment requests, this specific misunderstanding is still part of their protocol.
Meeting with my psychologist, 1st week of January 2008
Although I was feeling like I could explode any moment my psychologist insisted on speaking first. She told me she had spoken with my hormone expert herself and that she had managed to convince him of the fact that I did need hormones. But I never wanted to see the endocrinologist who had blocked my request again, so the appointment for my hormone prescription was made with another hormone expert.
So I started using hormones in the second week of 2008. Six months after starting the hormones I told my psychologist that she’d better not use the information from my diagnostic phase in her scientific investigation because I had told her some lies. This clearly shocked her very much, but she didn’t really ask me which points I had lied about and which were true. After 10 minutes, I reassured her: after all, her conclusion (that I needed hormones) was correct.
Later in my process I have encountered more problems with gatekeepers, when it turned out that I did need a surgery. At that time, it was the same hormone expert (the one who had blocked me during the diagnostic phase) who was trying to stop me again: in his opinion my glucose levels were still too high to go into a gender reassignment surgery. I started to work on this with excessive efforts now, and I did manage to improve the levels then. In my first conversation with the surgeon I told him that I was worrying about the combination of diabetes with surgery: I was very afraid that the diabetes might cause all sorts of problems and extra work. He then told me that he didn’t see that risk and that he would also have performed the surgery if my glucose levels wouldn’t have changed.
After the surgery the glucose levels went up again. And 18 months later they also went down again, without too much effort from me.
The problems that existed in 2007 are still there. I know, because I have kept on following Facebook and transgender forums. That is my reason to keep helping people who come after me. I hope my history and my advice will help them.
I have the feeling that I have been confronted with one of the greatest disadvantages of the decision making in a multi-disciplinary team: because the team strives for consensus, one single team member who doesn’t endorse a treatment is enough to prevent it from beginning. And it also takes just one member to stop a treatment that is already in progress. The person who makes these decisions doesn’t have to have any previous (or future) contact with the transgender person it is about. Because the person who makes the decision doesn’t see the results, he will never be confronted with the implications of an erroneous decision and he will never learn from it. I have the feeling this is the main reason why these kinds of problems still persist in the VU gender team after almost 10 years: the most conservative care provider always gets his way. I cannot understand that a patient, no matter how pressing their request, doesn’t get access to the people who block their care due to completely erroneous assumptions about what is best in their individual situation.
The necessity of consensus is abused to forcefully make things happen that have nothing to do with the transgender treatment itself. In my case the problems were with diabetes, but I have heard similar stories about overweight, underweight, alcohol, drugs and smoking. The care providers who work with transgender people still grossly underestimate the need for transgender treatments.
What has happened to me motivates me to campaign for abolishment of the diagnostic phase and the gatekeeping. For hormone treatments and surgeries the decision making should be done only by the people who will be providing the care themselves. I have no doubt there are blood levels in diabetics that are so alarming that a surgery would be dangerous for the patient, but those levels are certainly far away from the ideal levels that are now required by the gatekeepers in the VU gender team.
Looking back on my whole transition process, the months in the diagnostic phase have been the most difficult months since my puberty. It is painful to realize that all this hadn’t been necessary if the VU would have worked with Informed Consent. Apart from these observations, the social transition from man to woman (coming out to my family, on the job, being kicked out of women's restrooms because of a too male appearance) was more difficult than the additional emotions I suffered during the hormone therapy or the surgery. In that sense the effects and problems around hormones and operations are often overestimated by medical professionals.