Trans healthcare: Painful and expensive
One trans woman's experience.
Today’s interview is with Barbara, a trans woman living in a large Southern city; I changed her name and excluded some identifying details to protect her identity, for obvious reasons.
Barbara works at a medical school, and began transitioning a couple years ago. After facial feminization surgery and top surgery, she was only able to take one day off work. After all, she needed that PTO for her vaginoplasty surgery, which has an even more brutal recovery period. (Other trans women have written about and posted images of what their faces looked like after such surgery, so check those out if you want an idea of what she would have looked like going into the office.) She “just turned her camera off” on video calls; an option that wouldn’t exist, of course, for many other types of workers.
Finding ways to keep working through medical recovery periods is a common theme in Barbara’s story. Though she took time off covered by short-term disability (at a third of her income) after her vaginoplasty, she has continuing medical needs that she must wrangle around her work, like dilating her vagina every day. She’s supposed to clock out from work every time she does that—can’t have people getting paid for a whole hour of time to do medically necessary treatments, of course—and when she goes back to the office, she’ll have to do it in the nursing room. The only reason it works right now is that she’s able to “lie to [her] boss.”
As a cis woman, I learned a lot from talking to Barbara. Perhaps the most shocking that she told me wasn’t covered was the electrolysis treatment—an incredibly painful process of hair removal on her genitals, which she needed before she could get vaginoplasty surgery. As she mentioned, this is a very important step, without which “you have hair growing inside of you, which is super bad.” I am not a doctor, but I would certainly argue that ensuring the vaginal canal doesn’t have hair growing inside it is an important part of constructing a person’s vagina. Yet insurance companies broadly disagree, including hers. Not only did she have to pay for it out of pocket, but her options for finding someone to do this medically necessary procedure were limited and poor quality, not to mention excruciatingly painful without sedation; she ended up having to fly to Chicago, with the help of a fundraiser and friends from the Democratic Socialists of America, to go to a place that could provide anesthesia.
This experience is typical, and it’s even worse for low-income trans people on Medicaid. A 2020 article in JAMA Dermatology found that “most insurance plans do not cover permanent hair removal for transgender and gender-minority patients,” and just six of all 51 state Medicaid policies the study looked at covered it; only one Medicaid plan covered hair removal for non-genital areas. Trans people are more likely to be low-income than the general population, meaning they’re more likely to need programs like Medicaid.
Contrast this reality with the outrageous cost of covering this aspect of gender confirmation surgery. A Reddit thread on electrolysis provides similar stories to Barbara’s, including her response to the pain (emphasis mine):
So I had my third round of facial electrolysis today and I don’t think I can handle even one more. Not only does the shock hurt, but the anticipation of the probe and the sensation of it entering my skin is psychological torture. I absolutely can’t stand it and I think I’m too traumatized to go back. I even had on numbing cream. I just can’t do it but I need to remove my facial hair.
There is a place in Texas (I can't remember the name of it. Sorry.) that puts you under general anesthesia, and multiple technicians do a marathon electrolysis session on you. I've heard of people having face, legs, and torso completely cleared in one day. Of course, not all of your follicles are active at the same time, so it still takes multiple sessions, but each session goes as long as necessary to clear everything that's currently active. As far as I know, there's nowhere else you can get electrolysis under general anesthesia, and this place is pretty expensive. The person who told me about it said she spent $26,000, and I'm pretty sure she only had her face done.
There’s a similar lack of coverage for facial feminization surgery, too. Barbara was only able to get this process done with the help of her community—and she still spent everything she had been saving for a down payment on a house. It’s just one more way that trans people, and others with high medical costs, are excluded from the primary way of building wealth in this country.
We also talked about the familiar problems of insurance approvals and other bureaucracy; Barbara told me she had to get six different providers’ approval before she got her surgery. She talked about hiding her bipolar disorder diagnosis from her psychiatrist, in case it affected her ability to get surgery covered. (Insurance policies tend to state that for conditions such as bipolar disorder, “an effort must be made to improve these conditions with psychotropic medications and/or psychotherapy before surgery is contemplated,” but what that means is up to your insurance company.) She talked about crying on the phone to her short term disability provider, after having to prove over and over that she still couldn’t work—just to get a third of her income, which is usually around $40,000 a year.
Barbara’s story is one of pain and endurance. She has had to grit her teeth and suffer through an immense amount of physical and emotional pain to be able to live her life as the gender she knows she is. Some of this is the inevitable consequence of an intensive medical process. But there’s also plenty of avoidable pain in her story, which could be alleviated by treating healthcare, including trans health, as a human right. That means ensuring that anyone can get the healthcare they need without paying for it; that healthcare services are available equitably, regardless of geographic or demographic factors; and that the time off required to deal with health problems or recover from medical procedures is fully paid for. All of that must be done in addition to accepting that trans healthcare is just as necessary and important as any other healthcare. If every insurance company improved their coverage of trans healthcare tomorrow, it’d sure be better, but myriad other problems and inequities would still hamper trans people’s access to care, as it does for cis people. None of this can be achieved with only minor reforms to how we pay for healthcare—no matter what politicians say.
This interview, conducted in February, has been edited and condensed.
Barbara: I started medically transitioning in April/March of 2018. My job didn't have good insurance, so I had to go to Planned Parenthood, which is kind of the only place locally that you could really go to that doesn't require you to have an endocrinologist or work with anybody like that. They have an informed consent model, so essentially, they tell you what will happen if you start doing this, and I was like, alright, fine, cool, and started doing it. I ended up switching jobs, and I started working at a medical school here now, I've been working there since 2018. I came out on the job, I was already out to some friends and stuff, but I didn't come out on the job until the beginning of 2019. Working in a medical school is really weird, there's all sorts of weird policies around stuff where I had to come out in front of my entire staff, which is like 100 people.
Sick Note: In person?
Barbara: Oh yeah, super in person. I was the first person to do it in the medical school, and there's not many trans people on campus anyways, especially not staff. After that happened, I helped write policy and guidelines for how to deal with somebody who's coming out.
Sick Note: To scratch that part, I can imagine.
Barbara: Yeah, to not replicate what happened. That was crazy. I don't think they do that anymore; at least I hope not.
I got my name changed early 2019. I had been on hormones for a little less than a year, and that's when I was able to start going to see a primary care [provider], and able to start talking about like, what does what does long-term transgender health look like for me? [My hospital] is lucky because they just opened a transgender health clinic that focuses and has a specialist in helping transgender patients. So I started seeing her—after several months on a waitlist, of course—and she's great. I'm gonna be talking a lot of shit about the doctors that I've had to deal with, but there are two within this broader story about what I've been dealing with that are actually good. So I started seeing her talking to her and talking about, okay, I want to eventually get to the point where I'm doing facial feminization surgery, top surgery, and bottom surgery.
We talked about a plan for all of that and my primary goal, my number one on the list was getting vaginoplasty, which is a very long and tedious process. So I started seeing a plastic surgeon—these are the two cool doctors. He trained in Belgium, so he's really familiar with the Dutch model, which is a very specific type of 360 degree form of transgender health, where they start you on hormones at a younger age. It is a much better model, and the more that I studied it, the more that I'm like, wow, if I had a trans kid, I would just fucking move to Belgium. He is pretty great. I started seeing those doctors and undergoing that process, so over the past two years, I've probably seen that plastic surgeon upwards of 50 times, which is a fucking lot.
I learned part of that way that I needed to undergo electrolysis. This the one thing that I feel like a lot of people miss, and it's not really reported on or anything like that, because it's not exactly something one would think about, but it's a really expensive process. And in terms of medicine, it's super not regulated—they don't do it in hospitals, you have to go and find a medi-spa or something like that where they do it. The idea here is you have to remove all the hair because essentially the skin and muscle that you're using to develop the canal in the new vagina is going to be basically your dick inverted, and if you have hair on that, you have hair growing inside of you, which is super bad.
Sick Note: Yep, no thanks.
Barbara: Yeah. The stories that he told me were pretty fucking awful. I didn't get told that until much later, and I'm like, okay, well, I need to start figuring this out. And that's when I started going to some places and having that experience of going to a bunch of different [places]—whether it's calling people on the phone and they're like, yeah, this is fine, and then going in there and having women tell me straight to my face, "Yeah, my husband wouldn't like if I did this." I'm like, well, that's pretty fucked up, dude. Why does your husband even know?
Sick Note: Who's going home at the end of the day like oh, honey, guess what I did today!
Barbara: You have to submit a report card to your husband.
I start doing that. I don't know if you've ever done anything like that. It is excruciatingly painful, and I don't think of myself as a weakling. Essentially, the way that it works is they stick a needle within a hair follicle and then heated up to I think about 180 degrees, which cauterizes the the hair follicle, so it doesn't grow again. And you have to do that two centimeters around your shit and up and down your shaft, and that is probably the most sensitive area of your body, and it's painful.
Sick Note: And they do every hair follicle?
Sick Note: Oh, nasty.
Barbara: It's rough. So I started doing that, I found a woman who is more out in the country. She does it in her house, it's really fucking weird, and I went there and we had this long conversation—we're going to start doing this, you're going to need to come here probably every other week or something like that for us to get this done in a reasonable amount of time. And that first day was once again excruciatingly painful, and I couldn't handle it. I originally booked a three hour session and I just broke down in pain and left, and she was like, okay, we might have to shorten these sessions. I started having my partner come with me to help with it. And eventually just the pain became too much, even beforehand I was trying to deal with it, doing drugs to deal with the pain. And it didn't help, even as fucked up as I was going in there, it wasn't enough.
Sick Note: Would you mind specifying which drugs you did? [Note: I am not a cop.]
Barbara: Let's see, I started doing more weed, doing a lot of edibles beforehand. And one time used some oxy to kind of dull everything. Even that wasn't particularly helpful.
Sick Note: Perhaps if it was done in a more medical environment, then there might be more options for pain management, or even sedation and things like that, but doing it just in some lady's house in the woods seems like that's not the ideal environment for that stuff to happen?
Barbara: Exactly. So I gave up doing that, and that's around the time that my funds were slowly getting exhausted. Every single time I went to that woman, it was $150 for an hour long session. And that's a lot. If you were doing not just the area that I got done, if you were to get your face and other parts done, it would cost definitely upwards of $50,000, easy—and none of it is covered by insurance, I don't know of any insurance that covers it. So that's when I started a GoFundMe to try and fund this, because it's just so expensive. I started doing research on it, and there actually just a couple places across the country, they'll sedate you a lot better. One is out in Chicago, and I was able to fly there. I have some DSA friends who live there and gave us a place to stay. We were essentially there for less than 48 hours. They give you twilight anesthesia intravenously, and they use a topical solution as well as they inject a numbing agent—gotta say, once again, a very sensitive area that they're just directly jabbing a needle into, a very big needle, Libby, I cannot underscore this enough. And it hurts and I still have nightmares about it.
Sick Note: I can imagine. I mean, a wax is bad enough. So I truly can't imagine, the way you described it is very visceral.
Barbara: Yeah. And it's honestly death by 1000 cuts because I feel every single one if you don't have anything like that.
Sick Note: And so when you had the anesthesia, was that a lot better?
Barbara: Yeah, it was a lot better. And I had to do that a total of three times and I had three full clearings. So I would go there once, get a full clearing and then wait a couple months and then come back.
Sick Note: So what stage are you at in the medical process right now?
Barbara: I've basically had all my surgeries at this point. May 2020 I got face and chest surgery at the same time, which was a lot. I was saving all of my time off for my vaginoplasty, and I only have two weeks' worth of PTO. So I took a Friday off, and then by Monday, I was back at work. I just turned my camera off. I can send you pictures of what I looked like, I just had giant swollen cheeks, a head wrap that I had to sleep in, had to wear a sports bra for several months.
Sick Note: What is your job specifically?
Barbara: I help coordinate the research program at the medical school. I'm not a doctor, I have a degree in English. I mostly deal in spreadsheets and making sure mentors help their students, and that we get all of our assessments and stuff in on time. Definitely not at the medical level. So I'm like an office clerk. I have no particular skills in medicine or anything like that. But I have talked to a lot of students about their training that they get in transgender health, which is really not a lot. The one course that I can think of in my program, they deal with one transgender patient. It's this course that deals with case, they essentially get this case file where they have to figure out what the issue is, and how you would treat a patient. Since the medical school started, I think over 100 years ago, this is the first time that they've ever had a case where they were dealing a transgender patient. I know that there's really not much else representation, and maybe that's changing, but really haven't heard anything like that.
I did work kind of closely with a student who did do a six month research project on the transgender health clinic looking at health outcomes, a qualitative study of changes in attitudes and behavior towards medicine in transgender patients, and helped her with interviews and actually developing the survey and stuff, and just had this very long discussion about gender and sexuality. She's a very good student, and I think emblematic of—she does very well, she's an honors student within a medical school that is one of the top medical schools in the country. And she really didn't have as much of a grasp on gender and sexuality as I would, and I'm just some fuck. Even talking to some of the research directors, it is honestly very weird having these conversations where it feels like I'm teaching them. And they're heads of the hospital and programs, and deans, and things like that.
Sick Note: Do you feel like they're receptive when when you have to teach them? Or is it always a bit of an uphill battle?
Barbara: I would say the majority of the research directors that I talk to, they're receptive. We work closely together anyway, so it'd be kind of adversarial if they weren't. But I have had like... I can't really clash with students, because in some ways they're who I work for, but I definitely have had to leave conversations because I'm like, okay, well, I don't think we're going to get any headway here.
I don't know if you know anything about grand rounds, but it's an opportunity for leading healthcare providers within the hospital to give a presentation and updates about what they're doing, in their field or in the research that they're doing within their area of the hospital. Both of my doctors and then a different ethicist came to do a presentation about transgender health. Normally, these are closed to just medical students and doctors, but I snuck my way in because I was curious what they would do. So I listened to it. Once again, these are two doctors that are good. The ethicist, I didn't know her, but she had a really good presentation. And then the Q&A section was just brutal, just hearing what some of these doctors were saying about transgender patients—"What if we refuse to treat transgender transgender patients, how do we deal with that" And it's like, well, you can't really if you're a good doctor. And talking about, well, would we be able to move them? Obviously, right now, there's this huge discussion about puberty blockers, and that's just such a huge boogeyman. It's the bête noir of every fucking dumb piece of shit that has no idea what it's like to deal with being a transgender person, knowing it, and not being able to do anything about it. But hearing doctors who were in the plastic surgery clinic that I go to talking about how, "I really don't feel like we should be giving kids puberty blockers," and hearing that and just being like, these people are going to go treat patients, and this is how they perceive them. In addition to other stuff, just having a complete misapprehension about how vaginoplasty works, facial feminization, surgery works.
I did actually ask a question. I yelled at everybody in the room just saying like, you do know that there are transgender people in this room right now and hearing some of the things that you people are saying is absolutely disgusting and shameful.
Sick Note: Hell yeah.
Barbara: Yeah. And then I had a bunch of lib doctors can come up to me and say like, Oh, thank you for speaking your truth, and you're so brave... Motherfucker, just give people healthcare. I would assume if you're a doctor, you want to help people and there's a whole lot of different types of people. And if we are reaching the point in society where we understand if you're a racist doctor, you can't be a good doctor. I think that there are other things that we can understand—if you're a sexist doctor, if you're a transphobic doctor. You should be able to accept those types of things. But apparently, that's still a large medical discussion. The medical people don't really understand humanities and philosophy.
This is a small aside to talk about some some complicated forms of sexism. I will tell you most doctors don't see trans women as women. That's just, that's an activist sort of thing. And that sucks, because then that develops this level of sexism where they're treating trans women as men and trans men as women. So the progress at least within the hospital in terms of trans women's health is further along than trans men's health because of that. When it comes to phalloplasty, developing a new penis for a trans man, there is literally nobody within the hospital that knows how to do that, there's nobody that has any of the training and that science is still, it's not great. It's still up and coming and it's very arduous. And it's because it's under studied, that's basically it, there's not a lot of people doing it. I'm not saying that like trans women's medicine is super better, but you can really tell the difference.
So to return to the vaginoplasty, in terms of the signing off when it comes to insurance. Originally, I started having to go to a therapist for other stuff. And once I decided I want to do this, I had to have this conversation with my therapist, like hey, I need to get you to sign off on this. So at least when it comes to my insurance, I know this mirrors a lot of other types of insurance, saying that you need approval from your main therapist, approval from a second therapist, approval from a psychiatrist, and then the approval from your primary care and your urologist. And then finally a plastic surgeon. So that's, what, six layers of approval?
Sick Note: Each with a copay.
Barbara: Each with a copay. Once again, I'm very lucky that I work at the university and we get a discount at the university hospital because it's gargantuan what you would be paying otherwise. And the hospital that I go to, they won't even let you if you don't have insurance. In the trans community, at least among trans women, we joke and call those the permission slips. Which is effectively what they are. I had to hide some of my mental health issues from my psychiatrist and other therapist, because a lot of the times they will look for almost anything, especially if you get a not great therapist, or not great psychiatrist. I'm bipolar, I've known that for a very long time, I take medication for it. But when I went to go see my psychiatrist, it wasn't actually written in my charts that I was bipolar, because I told my therapist, don't put this in here until I get the approval. That could be a serious barrier to care. I talked to him about it, offhandedly asked, what could prevent people from actually getting health care and getting vaginoplasty or phalloplasty? He said well, whenever there's a risk of suicide, or if you have an eating disorder, it can be harder to get it. And it's like, well, I've definitely tried to commit suicide, and I definitely have an eating disorder. So I'm glad that you don't know those two things before you can sign this paper, because all of that's bullshit.
Sick Note: At first, I thought you were saying that you needed to have a risk of suicide in order to get it, because at least that has some kind of gross logic of, well, we'll do it if this person is so messed up that they might kill themselves if they don't get it or whatever. But the idea that this fact of your existence can't be so difficult for you to deal with that you have gotten to the stage of of attempting suicide like that, we know that trans people have mental health issues, because it's a really hard thing to deal with.
Barbara: Yeah, no, totally. And there are just so many comorbidities when it comes to why you might want to commit suicide. For me, it's not because I'm trans and a lot of the people, it's not because they're trans, it's because they live in a society where—for example, the biggest fear for a lot of young people for coming out for being transgender is becoming homeless. That's a real fear that a lot of kids struggle with, and until they're emancipated from their parents, they won't do anything, and they can't because they don't really have any autonomy, and the way that we treat children is just more like property than anything. So I had to hide some of my health care issues and my mental health issues for my psychiatrist in order to get that done. Urologist was fine. The second therapist that I went to, he lives really far away from where I live, we did it over over Skype. And effectively, I was told that he kind of rubber stamps these things, because he's also a queer person, and he also deals with a lot of trans patients — his business cards have the pride flag on it and stuff, and he deals well with those patients. We met two times for an hour over Skype, and that was it. But like you said, it's all the copays, it's getting all of that stuff done.
Sick Note: I know from experience that even finding a psychiatrist in network is so difficult, even if you're not looking for a specific kind of psychiatrist who you can trust to listen to those issues, specifically. I had fancy employer sponsored insurance, and the only reason that I was able to get an appointment with a psychiatrist was that I was already a patient in a particular hospital system, there would not have been any other way for me to see a psychiatrist in network. So the idea of having to jump through another hoop, that's huge.
Barbara: Plus all of the referrals and stuff, having to double back to your primary care, to make sure that you're not just going there willy nilly. Because if I do, then that's a $400 charge. And I don't have a lot of $400.
Sick Note: It's up to you if you want to share, but I was going to ask what sort of income range you're in?
Barbara: I make around 40 grand a year. And I wish I could have gotten help from my parents, but I couldn't.
Sick Note: They're not very supportive?
Barbara: To say the least, yeah. You know, I'm 28. It's not like they have a super amount of influence on my life. But my mom left when I was a kid and my dad raised me and... [it's] just like a dagger in the back. The last time that I talked to my dad was around my birthday last year, that was a few weeks before I was slated to have the vaginoplasty. He texted me, and I was like, so I want you to know that I'm doing this. I've had surgery once in my life, I'm going to be in the hospital for at least a week. So even though I haven't talked to you in a year and a half, I still care that you know, and after I texted him that, I haven't talked to him since, he hasn't sent me any messages.
Sick Note: That's awful.
Barbara: My parents haven't let me come out to anybody else in my family besides my sister. And once again, it's not like I have a super close relationship with my mom's parents or my dad's sister or anything like that. But the support—I'm not asking for money, but the knowledge that there's somebody supporting you is, at least propels you more. Literally the only reason why I was able to do this, financially, emotionally... I'm a DSA person, I was doing DSA union shit today, but I really can't underscore [enough] that that is the reason why I was able to do this. And this is how it always, the poorest people, riding on a spare tire that they've been riding on for 100 miles, giving you their last 100 bucks. That's incredible, and that it’s the only reason why I was able to do this is ridiculous.
I've been recovering from vaginoplasty, I had to take a month and a half off work. Thankfully, short term disability covered it, but the short term disability company that we have are fuckers. First of all, ok. They suck. I hate them so much. They make you call in and give them a little progress report about how you're doing, and then you have to get papers signed by your fucking doctor that says like, yep, she still shouldn't be at work. I am recovering from surgery, I can only walk 50 feet at a time. And it's excruciating for me, I have to go to the doctor once a week and make sure that he actually does this, which doesn't always happen, for fear of falling off of short term disability, which pays a third of my salary for a year. Actually, technically, I'm not salaried, I'm an hourly employee. So I hated that company. There are times where I got on the phone and was just yelling at the person, but just sort of crying and just being like, this is so cruel what this company makes you do. Just being like, I know that you work here and nobody likes to work in a fucking call center because I've worked at a call center and it sucks, but you work for a really shitty company and I hope you know that. It's not your fault. No one likes working here. And if you do you're fucking psychotic.
Sick Note: And so you said you're making a third of what you were making before?
Barbara: When I was on short term disability, they only pay you out a certain amount. And that's taxable. That was my second W2 that I got, that shit. What was nice though, I will say, 2020 was a banner year for me and medical costs. So I was able to write off a lot. Unfortunately, I spent 15 grand on facial feminization surgery, because it's all considered cosmetic, and you need to pay it in one lump sum. So it was either throw down cash or... And it's so fucked up that they're like, if you if you pay us now, we'll give you a break, if you pay us cash, or you can go and get like a medical loan and you can do it then, but it'll be more expensive. It's like, am I buying like a fucking car? What is wrong with you?
Sick Note: So did you end up getting a loan for that?
Barbara: No, once again, I was able to raise enough money from people and pay for it. I had been scrimping and saving for years. I essentially spent all the money that I was going to spend on a down payment on a house, and had to raise a lot more funds in order to do the stuff that I wanted to do, and then on top of that had to pay around five grand for the stuff that was actually covered, the surgery that was covered by my insurance. Not even counting all of the other doctor visits and all this other shit that wound up in. I technically am still in recovery. And because I had surgery three times last year I was basically in high grade quarantine the whole time, I really never left my house at all. Which makes you go insane. Now I only have to see my surgeon once a month. As far as the stuff you have to deal with post surgery. Are you familiar with what vaginismus is?
Sick Note: I don't think so.
Barbara: So a lot of women have vaginismus. It's essentially like your pelvic muscles are too intense, and your vaginal canal is actually smaller. So what you have to do is you have to dilate, usually about once a day, once a week. And I have to do that as a woman with a new vagina. And let me tell you, boss, it is once again, super painful. Transgender health, I cannot emphasize enough is painful, emotionally and physically.
There's like a lot of TERF misinformation about what they would call neovaginas. I'm not really upset with that term, but I also think it's an epithet in some contexts. There's a lot of continuing health stuff that I will have to continue to do for the remainder of my life. I will have to dilate for the rest of my life until I die. I'll have to take estrogen, which I do. I now inject once a week since I don't have balls anymore, so I don't really have high testosterone. They kind of fixed that. Followed by dilating three times a day, which will go down eventually. But essentially my entire life rotates around that, and the only reason why I'm able to do this is because I am working at home right now, and I'm able to lie to my boss.
My boss knows that I do this and unfortunately has to know quite a bit about my own personal health care that I would really prefer that they didn't. I had to file a request with our Equal Employment Opportunity office and our accommodations office, and they're like okay, yeah, whenever you have to dilate, which takes anywhere from 30 minutes to an hour, you have to clock out. I work 40 hours a week, and that means that I'm going to be losing out on, let's just be generous and say one hour a day, that's five extra hours that I have to fucking work.