(Also available at www.gccan.org, which I strongly urge you to check out.)
Lee Leveille is a transgender intentional peer support specialist who writes about the shared border of trans, butch, and detrans experiences at www.reclaimingtransbutch.com. I know Lee because we’re both founding board members of GCCAN. Lee is passionate both about high quality medical care for gender care consumers and the right of gender dysphoric and gender non conforming people to own the complexity of our identities and experiences. This passion partly stems from the complexity of Lee’s own experience accessing gender care. You can follow Lee on Twitter at @Trans_Butch.
How did your medical transition begin?
That started when I was in college in 2007. I had gone to the student clinic to see a psychiatrist, who diagnosed me with gender identity disorder, but I determined it wasn’t the right time to start testosterone. I spent the next 10 years developing coping skills for myself, getting my housing and finances straightened out, and doing research into what medical transition would entail. By the time I finally set about starting testosterone, I probably knew more about the research behind gender dysphoria and how it’s treated than my treating provider did.
10 years of considering testosterone as an adult is quite the discernment period. When you felt confident about beginning HRT how did you choose your provider?
My process was a bit different than for a lot of people. Around 2014, I saw a nurse practitioner at Maine Family Planning. I had mentioned to her some of my gender stuff at the time, and she informed me of a new informed consent project that they were starting called the Open Door Project. She offered for me to participate but it still wasn’t the right time. I didn’t approach them about it until June of 2017, again with the same provider. I had already established a relationship with her by that point, so it seemed like an appropriate choice. Even outside of that, I chose an informed consent clinic on purpose. I figured that, with the amount of research I had done and my experience with self-advocacy, I had the resources necessary to go through the system successfully.
The first appointment through that project lasted about 45 minutes. It started with her asking me if I was alright with having another provider attend so they could learn how to provide the service to new trans clients, of which I declined. She then asked questions about my experiences with dysphoria, when it started, and what my general expectations were when it came to the effects of testosterone. She asked if I had gone to therapy, which I had but at the time wasn’t interested in continuing with. To my knowledge, they never followed up with my old therapist to confirm that I had gone. We also discussed sexuality and what kinds of precautions I would need to take. At the time, I hadn’t come to terms with being a lesbian yet, so the sexuality bit was mostly focused on whether or not testosterone could prevent pregnancy. There was some discussion of the long term effects, including vaginal atrophy and pain, but I don’t recall there being any candidness about the unknowns when it came to health risks or impacts on other medical conditions. The forms briefly mention being able to go off of hormones if the person so chooses, but we didn’t discuss this nor do the forms expand on the possible impact it could have on someone’s health. By the end of the appointment, I was set up to get labs done at a local hospital and then would be able to start my testosterone once they came back.
That clinic ended up putting you in a situation you felt misled by. Would you tell us about that and the HIPAA violation that followed?
Okay, so, that happened after my follow-up appointment. In December, after I had called to schedule my appointment for January, I received a call from the clinic. The person on the phone asked if I was willing to consent to having “a shadowing provider” present to learn how to handle trans clients “in the event that [my provider] was unavailable.” The language for this request was different from how my provider had originally presented it, and I had worked with shadowing students before, so I agreed. The way it was presented to me gave me a very different impression of how the appointment was going to go than it actually did.
When I finally got there, there was an iPad set up for teleconferencing. Apparently, the person “shadowing” was a provider from Machias, a clinic that was over 3 hours away. I later found out that the reason they were training this provider was to expand their services to additional clinics throughout Maine. To my recollection, no one checked in with me to see if it was still alright, and even if they had, I was still in the position where I felt my choice was to comply or risk the refill I needed. Also, the appointment wasn’t being run by my usual provider, but rather this new person from Machias. That was a serious problem given the sensitive nature of the questions being asked, especially when the first question was if I “had any concerns.” I did, but in no way was I comfortable with sharing them. The whole situation was profoundly retraumatizing and reminded me of past situations where I felt trapped and forced to comply.
Being put in a coercive, misleading, or otherwise ethically iffy situation by a doctor is often disorienting for people, because the consumer generally is way less informed about medical ethics than the professionals and because we’re socialized to project a lot of goodwill and competence onto medical professionals. How’d you get to “oh shit, this was really wrong and I want to respond?”
Through talking with other people who have dealt with terrible providers. I processed the situation with a close friend of mine, who informed me that it was a form of deception and that it was a reportable offense. I thought it was messed up but hadn’t thought about the full legal implications until then. I debated whether or not to report her but held off for the time being. I definitely wasn’t going to return to that clinic though, so I went to my primary care physician to get a referral to a local endocrinologist I heard good things about. I stopped engaging with my original clinic, which my first provider took notice of. That’s when she reached out to me via the patient portal to try to schedule with me, some time in late April. I told her that I was seeking services elsewhere and no longer needed theirs. She offered to set up the referral for me and asked where the records needed to go to. When it became clear that I had already gotten that taken care of without her, she must have realized that I was avoiding her. That was when she asked for feedback because they “really want to know if [they] aren’t doing what [their] patients need.”
Thinking back to those years of established rapport, I told her of my skepticism in how the informed consent model is put into practice, as well as feeling deceived into providing training I otherwise wouldn’t have consented to. She wasn’t prepared for that kind of feedback.
So at this point, your doctor had picked up on a pattern of avoidant responses, made the connection that avoidant responses can be a sign that something has gone very wrong in someone’s care, and successfully re-engaged you. If the story stopped right here I’d judge her to be a pretty concerned provider. But this is the moment when her willingness to hear you out seems to end.
Pretty much, yeah. She told me that she would like to respond via letter instead of in the portal and then we could part ways peacefully. I didn’t respond.
The letter arrived May 14th. In it, she asserted that their model was effective because it followed foundations set by the Fenway Institute and that she felt I was fully capable of informed consent. She also responded to my reaction to being deceived into providing training as being about me feeling “abandoned” when that was not the concern.
There’s a heavy implication there about your psychological health, which minimizes and redirects the discussion away from the issue of whether they adequately described what they were asking you to consent to. So you get an “We regret you felt abandoned” but not a “We regret we didn’t explain what we wanted you to consent to.” Was this at all disorienting or did you identify the bullshit immediately?
I recognized it immediately. It was pretty clear to me that her closing remarks didn’t address my actual feelings, and that was part of what angered me so much. I didn’t feel heard at all; she was interpreting my feelings of being deceived into something that would continue to enable the behavior I was harmed by but towards future consumers.
But what was most profound about the letter was that she also sent me an unauthorized, uncensored copy of my intake records from my first appointment with her in June. Said records included identifying information such as my address and legal name, as well as detailed information about my diagnosis, trauma history, sexual orientation, and the project that I was being treated under. All of this was sent to my PO box, which I only renew every 6 months. She didn’t confirm that the address was correct, either; had it not been, that information would have wound up in someone else’s hands and I wouldn’t have known because I hadn’t signed a release. This was particularly reckless when considering the fact that central Maine is fairly conservative and thus her thoughtlessness could have put me at serious risk of harm. Recognizing it as a HIPAA violation, I requested my records, confirmed they were identical, and drafted my letter of complaint to the licensing board the same day. Unfortunately, they found in her favor and dismissed the case even though I still have a copy of the original records and the letter in which she confessed to sending them.
What went into your decision to stop taking testosterone?
There were a lot of factors, several of which I was open about with my new endocrinologist. I started seeing her in July of 2018. By that point I had already established I wasn’t going to be on testosterone long-term and told her as such. We had agreed to start with a new assessment instead of requesting records from my old clinic, but the process was simplified since I had already been on testosterone for a year. Considering that and my eventual plan for going off testosterone, we discussed what impact that could have on my health if I were to pursue a hysterectomy. Afterwards we set up an appointment in April of 2019 to discuss my taper plan. It was in the April appointment where I highlighted concerns about there being a lack of research into the long-term health impact of HRT, as well as the elevated stroke risk of which I was already at increased risk of before taking testosterone. The endocrinologist affirmed the fact that not enough research was being done and in some cases, such as with rare comorbid conditions, it likely never will be. She also noted that there were no tapering guidelines for HRT and thus the pace would largely be within my control.
One of the more concerning aspects to your experience is that last year you began to experience loss of sight. Would you tell us about the onset of your loss of sight and how you began to suspect it was connected to your T use?
Around June of 2019, I noticed that I had developed a blind spot in my right eye. I had dealt with blind spots at night before, but they had always gone away after a few days. This time, it hadn’t been. On top of that, I noticed that my right eye was getting increasingly uncomfortable, sometimes feeling hot or like it wasn’t sitting in the socket right. I was also becoming increasingly sensitive to light during the day. What was most alarming about the situation though was the timing. It correlated with when I had fully stopped testosterone. I set up an appointment with an optometrist to get it checked out in September, and I shared with them my concern that it was related to going off my hormones. The optometrist was receptive and affirmed that there was a known relationship between hormone changes and vision changes, particularly in pregnant women. He couldn’t find anything wrong with my eyes at the time but scheduled me for more tests in October.
However, a week after that appointment, I noticed that my vision changed again and that I had developed a blind spot in my left eye. I no longer had any central vision if there wasn’t adequate light. The office canceled the appointment in October and got me in the next day with a different provider. Said provider still didn’t find anything structurally wrong with my eyes, but did note that I had smaller than usual ocular veins. She explained that changes in blood flow could cause transient vision problems, especially with my history of migraines and correlated blind spots. The problem was that my vision problem was anything but temporary. She suggested that I be seen by a neurologist just to rule out other possible causes, but ultimately concluded that the most likely cause was my going off testosterone. She also suggested that I make a symptom diary to keep track of my vision changes. Upon doing so, I noticed the fact that changes in my vision correlated with my menstrual cycle — another indication that it was hormonal in nature.
What was the response you received when you reported the sight changes to your endo?
Not good. Once I made the connection between my going off HRT and my vision changes, I scheduled a followup appointment with her to share what had been going on, to see if she had any knowledge of cases like mine, and what I can do. Her tune toward me completely flipped. Someone who had previously been very supportive and who recognized my capacity to be informed about my care was now dismissive to the point of callous. She cut me off, saying she didn’t think that going off testosterone was responsible for my vision loss, despite later commenting on how she had been treating trans men who had to go off it due to vision changes. She then suggested that I be seen by a neurologist and ophthalmologist, as she doubted the professional insight of the optometrist I had seen.
It took a bit but I did get in to see the ophthalmologist, who repeated the tests that the optometrists did and again concluded that there was nothing structurally wrong with my eyes. Upon asking about the hormonal connection I had noticed, he said that he didn’t know. His assertion was that the most likely cause was neurological, which was the opposite of what I had heard from the optometrists. He then suggested that I pursue an appointment with a neuro-ophthalmologist in Boston, a suggestion that my endocrinologist easily could have given. Despite all this running around, delays of months (a significant amount of time when losing one’s sight), and multiple people questioning possible neurological causes (albeit to different degrees), no one had scheduled an MRI yet. I had to get that referral from my primary care physician after detailing to her this whole saga.
One lesson I draw from your experiences is that individual consumers have to be prepared for positive relationships with doctors to shift dramatically once a doctor feels called out. That’s a tough experience for consumers to choose to take on. In retrospect were these one on one conversations worth the effort?
Yes and no. It depends on your outlook.
If we’re talking about whether or not they’ll actually change their practices or how they treat people, probably not. I wound up putting myself on the line in those conversations, with limited reciprocation. In neither case did I feel heard. If anything, I felt punished for speaking up. I did wind up sharing my experience with my first HRT provider to my endocrinologist, who consults with them and who helped build their program, and they did change a few things. I don’t know if that’s related or not, but if so then I guess that’s a plus. But if that’s the case, I had to go outside of those one-on-one conversations to even accomplish that. It does make one wonder if there’s a point.
At the same time, I also recognize that it is critical for people like me to speak up about our experiences because otherwise they will never be heard. Often times, providers are not used to people advocating for themselves. The more people find their voice and speak up, the more change can happen. It also serves as a good learning experience on an individual level. Providers that we trust may wind up betraying that trust, and therefore it’s all the more important for us to have our own and each other’s backs.
What advice would you give to a person reporting a provider to their licensing board?
First, consult an attorney or consumer rights advocate. They will know more about the specific legal channels available to you, including appeals, as well as detailing what complaints constitute a violation of patient rights according to local laws. They may also be able to help with developing a stronger complaint letter to the board. Finding a local consumer rights advocate that is familiar with trans health care may be challenging, though. Look into all of the possible options, including ones that only seem tangentially related, such as disability rights. Maine, for instance, has advocates through Disability Rights Maine should someone feel their rights were violated but would otherwise feel uncomfortable with approaching a trans advocacy group.
Second, prepare yourself emotionally for either the possibility of failure or impending court cases. Challenging providers is a long, drawn-out process that can be seriously draining for people, especially if the person feels traumatized by the experience. Some cases, if the damages are significant enough, can wind up going to court and then your personal experiences will be aired out in public. Is that risk worth it for you in particular? If so, what will you do to care for yourself in the meanwhile? Same thing with the provider prevailing instead of you, as these systems are often stacked in their favor. Get support from people you trust to get you through it, no matter the outcome. You’re going to need it.
What do you hope the members of GCCAN can build for gender care consumers?
Honestly, I was dedicated to improving the care for gender care consumers even before the changes in my vision happened, in part because of my encounters with my first HRT provider. However, it became a life mission after the profoundly traumatizing experience of feeling abandoned by providers that were supposed to support me when I was already reeling emotionally from the loss of my vision. I shouldn’t have had to experience this. No one should. It was during this series of events that I began getting involved with GCCAN. Despite all of the research I had done, I was in no way prepared for this possible outcome, nor was there any system of support for helping me cope with what was happening to me. I had to fight my way through this using my own advocacy skills and through reaching out to people that cared about me for support. Not everyone has access to that. If I was struggling this much even with the foundation I had set up for myself, what hope was there for someone who hadn’t?
To me, working with the board of GCCAN means being able to share with people both my experiences and knowledge that they need to make more informed decisions. It also means being able to educate others on their legal rights should they encounter an unethical professional like my first HRT provider. My hope is that, by working with equally dedicated and skilled gender care consumers, we can create a system of support that I didn’t have access to when trying to navigate this system. We are stronger together than alone. United, we have the opportunity to shift the tide for the benefit of all.