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Detrans Broken Arm Syndrome

I saw the ophthalmologist yesterday.

This is a point of struggle for me. My relationship with eye doctors, like all doctors, is a bit precarious. That’s always the case when you’re disabled or trans but especially when you are both. Even more so if you’re both, have a tendency to do obnoxious amounts of background research, and pair that all with self-advocacy. Many times, doctors don’t know what to do with you if you’re disabled or trans, and they really don’t know what to do if you’re the uppity one. Of which I can be.

Doctors and I have been doing The Dance since I was a child. Something goes wrong, (maybe) try to find out what it is, can’t or it seems like too much trouble, blow it off. I had finally started making some headway on this, securing real answers and successful treatments (of which T was one), until my vision loss struck. Then the cycle continued, particularly since said vision loss seemed to correlate with stopping T in the spring to early summer of 2019.

Unfortunately, stopping T isn’t the only thing it correlated with. It also happened in the thick of when I was first trying to build bridges with the detransitioned community. I wanted to better understand what their medical needs were, learn how to be more supportive, and mutually create a better system where the material needs of both of our communities were getting met.

It didn’t go well.

By fall of 2019, I was panicking. My body was in crisis and, by consequence, my mind. I talked to friends, coworkers, and four different doctors. First, an optometrist when I noticed the blind spot in my right eye wasn’t going away, and again at the same office when it hit my left. Then my endocrinologist because of its close proximity to my detransition. Then an ophthalmologist, per my endo, because she disagreed with the medical opinion of the first two. Each appointment was more traumatic than its predecessor, leading me further and further into the spiral of regret.

With the regret came rage. With rage came yelling on Twitter. With yelling came parasites smelling blood to drain.


Let’s talk Detrans Broken Arm Syndrome.

Detrans Broken Arm Syndrome is a variant of Trans Broken Arm Syndrome. Trans Broken Arm Syndrome is the phenomenon where a trans person seeks medical attention for a random, oftentimes completely unrelated condition, and doctors assume it to be connected to them being trans. This is especially the case if, like the responsible and informed patient they’re encouraged to be, they bring up being trans or having transitioned medically. Being mindful of one’s health is important, and so sometimes it’s a point of concern that there might be some complications going on. All treatments come with risks, after all.

The issue of course is that bringing up this issue is predictably a crapshoot. You never know how the doctor is going to respond. Research into health care outcomes for trans people is still woefully behind, and then there’s the transphobia bit. And the central focus on the ideal, healthy body bit. Healers seek to heal and not being able to do that can scare the crap out of them. Trans people sit outside of society’s ideals for gender, and disabled people sit outside the ideas for health and well-being. In both instances, our bodies defy the worldviews that people have constructed for themselves, their very way of understanding reality. We are the biological and psychological hackers changing our physicality, in one way or another, in efforts to exist comfortably in our own bodies and minds and, maybe, society as a whole. In many cases this involves medication and, occasionally, surgery.

When you Go To The Doctor As Trans, and you’re complaining about x, y, or z, minds jump to other letters of the alphabet. The T. The E. The S. And when minds jump to other letters of the alphabet instead of listening to what you’re saying, and understanding the context or noting key symptom clues, the real cause can be missed and either you go down the rabbit hole for nothing or are turned away entirely. The last four doctors I saw for this did some combination of the two. It can have disastrous consequences for your well-being, whether physical or mental, and even more of an impact on your ability to trust the medical system in the future. Yet I still try, in part because I have to, and in part because there are doctors that really do try and are supportive in the process. Though I’ll admit it’s a challenge no matter how much practice I have.

Detrans Broken Arm Syndrome is similar but it’s culturally enforced by your peers and supporters instead of the medical field. It’s when you express a strange symptom you’re feeling, a pang of depression, or a sense of regret, and people immediately assume it’s because of you being trans. They’ll argue that “cross-sex hormones” are toxic to your body and destroying you. Or that surgery is butchery destroying your healthy body. Or that you’re depressed because you’re caught up in your delusions built on gender ideology. No real space is given for you to explore the meaning of your experiences, any differential diagnoses, or how to heal from your experiences while still trans. It comes from gender critical people, self-proclaimed radical feminists, weird transphobic parents, and yes, detrans people.

Trans people experiencing distress in relation to transition, whether medical or due to societal or familial pressure, are pressured to frame that distress in very particular ways. Often times, the people doing the pressuring think they’re helping. Shower you with sympathies. Dissuade from further efforts. Reduce the pressure by changing yourself. The world won’t or doesn’t need to change. Rid yourself of the delusion and you’ll feel better, promise.

I never did feel better. In many ways, I felt worse. I drank, quit my job, moved out of state, and got involved in organizing that depended on these ideas (again, under the guise of helping people like me). I became steeped in it, in the midst of a medical crisis, and it was killing me.

Don’t ever say you regret your detransition, though. No one ever regrets their detransition. You’ll fall back into the delusion and isn’t that just a tragedy? Don’t you know that you’re encouraging people to hurt themselves, to deny their own suffering? Don’t you know you’re just fueling the trans medical establishment?

When I started speaking more openly about my experiences detransitioning and how it hurt me, the pressure took the face of anger mixed with disdain. I was coming to terms with the fact that my medical situation was unavoidable and thus something I needed to adapt to. My vision loss didn’t make me broken, no matter how society wanted me to feel. I still had value. I still had worth. And I still had a heart. I remember how, when expressing this in combination with support for trans youth, the snide comments would come out with hundreds of supporters. Coming to a place of healing, if it came in the context of trans liberation, was forbidden. My pain was to continue flowing, letting the blood ooze from wounds that would be continuously reopened just to keep the feeding frenzy going.

Keep going. Keep going until you’re too tired to go on any further, until you’re barely crawling and the blood can’t reach your heart anymore. Let the darkness cover your senses, ignoring the pounding and ringing in your ears, as you drift to sleep. Sleep. You’ll feel better. Right up until it kills you.


This doctor was better than the last ones. For one, he already had experience with my weird medical mystery conditions. For two, he listened. Even after I dropped the T word.

When this happens, it’s a pleasant surprise. My mind wasn’t expecting this outcome – it was anticipating the same rat maze I was sent down the first year, wondering what dismissiveness I was going to get this time. But I had an advantage this time around. This time I had gotten a referral, not from a doctor but from a member of a local chapter for the National Federation of the Blind. She knew the area and which doctors were reliable.

Getting in touch with the NFB was a bit of advice I had gotten toward the beginning of this saga, when I was processing things with a friend and old supervisor. Her father, who became blind due to a genetic condition, was a member. I didn’t follow up on it at the time because I was already expecting to move out of state. Fell down the rabbit hole of the internet and de/trans medical advocacy organizing instead.

As my vision got worse, and with it my isolation, I eventually tracked down an event the NFB was holding called Ask A Blind Person. I couldn’t get in but I was at least able to start talking to someone, who then got me connected to the local chapter. Its members were eager to help me find the resources I needed, not based on some expectation of what my experience should be but based on what I thought was going to be helpful.

This turned out to be what I needed the entire time. That connection meant giving me suggestions on assistive technology to install, some of which I use for work now, or what features to enable to reduce some of my discomfort. They gave me the aforementioned referral. But most importantly, they gave me complete, unconditional acceptance and support. It didn’t matter how I got there, just that I was there and in the same position many of them had been themselves. Sure, I had a whole story surrounding my vision loss like many others there did, but there wasn’t any expectation of me telling it or doing anything with it if I didn’t want to. And no one asked.

And so then I find myself sitting in front of this eye doctor, telling him my story, and he picks up on a clue that had been missed by the others: my progressive night blindness. He then began to describe the rods and cones in my eyes, the cells that process light and send the signals to the optic nerve for the brain to interpret. And he talked about how, in some instances, they begin to malfunction.

Retinitis pigmentosa. A collection of conditions where the rods and cones deteriorate over time until they eventually die. They’re genetic and have no cure. Most people with it become legally blind by the time they’re 50.

Retinitis pigmentosa follows a particular pattern for a lot of people, one that matches some experiences I’ve had over the years that I never really considered. It starts young, anywhere from 10 years old to early to mid adulthood, and can have mild symptoms that you barely notice or can easily work around. Then, it spikes and the progression escalates. The time frame varies but it can take on average about 10 years to reach the spike.

In hindsight, I actually wound up fitting a lot of the patterns associated with it, much like how I did with EDS/HSD. I’ve had vision problems since I was a teen, though I didn’t start to notice difficulty differentiating between colors until I was about 20. It was subtle but could still impact my ability to read certain things, so I found myself using browser add-ons to change the colors on different websites sometimes. I was sensitive to light sometimes, though not terribly so, and developed blind spots easily. This was especially troublesome at night over time because of vehicle headlights.

And then about a decade later, I start and stop T. And the vision problems get worse. And I start ignoring them at first, until I couldn’t any longer.

Now, it’s not certain that this is what I’m dealing with. It could also be related to, well, my body being weird in general a la EDS/HSD again. But it’s the closest thing that describes not just my situation now but what I’ve dealt with and just glossed over for years.

In some ways, it’s agonizing. I hurt over how this correlation led me down a path of immense distress, worrying that I had done this to myself or feeling angry at doctors for putting me in this position. I hurt over the fact that I struggled to connect with people about it because the circumstances were so incredibly rare. I especially hurt when sketchy assholes glommed onto me, trying to push me to take on some martyr role to save the kids or just generally keep me in this spiral of suffering, and especially when those sketchy assholes claimed to be dysphoric like me.

Yet in other ways it’s freeing. I feel like a huge weight is lifted from my shoulders. Chances are, this is something that was going to happen anyway. It isn’t something that was caused by me or anyone else. The transphobes were wrong, as was I, and that’s okay.

We live in a society where bodies like mine, ones that don’t function quite right or click or have sharp pains or look like genderfreaks, are seen as defective. Where our happiness is conditional to acceptance. Where random life experiences or medical situations are assumed to be because we’re de/trans. None of this is helpful. I want a world where being trans or detrans isn’t the first thing that people see, where any and all of us can just be present in this world without assumptions about what our needs are or the consequences of our medical decisions. A world where we can, heaven forbid, see a doctor or a peer group without the “are you sure…??”. A world that respects autonomy in all of its forms, including in terms of personal identification.

Sometimes this feels like too much to ask.

So make it a demand.

Shout it from the rooftops, from the deepest part of your core, into the night until the dawn comes and no one can hide from it anymore. Scream until your throat is hoarse. Scream with friends, loved ones, crowds and swarms of people where all the hatred and bigotry is drowned out. Scream collectively until it turns into song and chant.

We are free. We are free. No matter how many chains you wrap us in, we are free. Now let us exist in peace.

Can You Hear Us? is a project that brings together the voices of trans, detrans, gender non-conforming, and questioning individuals calling for inclusive community and solidarity in pursuit of collective health liberation. This is an anti-oppression oriented space centered on solidarity with each other across axes of oppression and marginalization. Learn more.