#3: An Episode About Intersex
COMMUNITY VOICE: Maria Tridas |. HEALTHCARE EXPERTS: Sue Stred MD, Katie Dalke MD | COMMUNITY REVIEWER: Hans Lindahl
SHOW NOTES
Getting the lingo down
Note: tons of great content similar to this can be found via interAct and The Intersex Justice Project.
Intersex: term used for a variety of conditions in which someone is born with urologic, reproductive or sexual anatomy that doesn't fit the binary definitions of female or male.
Differences of sex development or DSD:
The medical community’s umbrella term for a handfull of medical diagnosis where a biological characteristic or anatomical structure does not meet binary definitions of male or female.
Not all folks with a DSD diagnosis claim intersex as an identity!
One last point: who does and doesn't identify as intersex is always political. It's often based on how people receive the medical framing of the diagnosis. Some intersex advocates expect that in a few years' time, calling intersex a DSD condition will sound like calling someone's gender identity or sexual orientation, a psychological condition.
Anatomic variations: a big-picture view
The overall incidence of any variant of sex development is estimated to be as high as 1.7% of the population (others make lower estimates). This is as common as folks with naturally red hair.
These variations can show up on a few different biologic levels
Genetic: e.g. Kleinfelter syndrome and Turner syndrome
Hormonal: e.g. congenital adrenal hyperplasia or androgen insensitivity syndrome
Because we talk a lot about AIS in this episode, here’s some more detail: it's a condition where individuals have XY chromosomes. But the receptor for testosterone has a slightly different shape, so testosterone doesn’t dock at the receptor. So the organs and structures formed by testosterone signaling are not there.
Anatomic: e.g. gonadal dysgenesis (the gonads - or testes or ovary precursors don’t form)
Variations can be discovered at different time points throughout someone’s life
Genetic screening or fetal ultrasound
Time of birth
Childhood, often while investigating a hernia or abdominal mass
During unrelated abdominal surgery, where sometimes undeveloped gonads are found
As part of the medical workup when someone who expects to get pregnant cannot
The role of hormones within intersex care
The biology of hormones
Body shape, voice, hair growth and distribution, bone strength, muscle development - these all depend on hormones (like testosterone and estrogen)
In binary individuals, these hormones appear around age 5 or 6 and increase around puberty.
How does this relate to healthcare for intersex individuals?
TL;DR: it depends on the individual. There is no set regimen or hormone therapy for someone based on a particular DSD variation.
Some individuals with an intersex condition identify as a gender other than that assigned to them by the time of puberty. Hormone therapy can help alleviate the distress which some folks may feel about their body, and help them achieve their desired form of gender expression.
As a reminder: just because someone is intersex doesn’t mean they are transgender.
Hot take: having the correct amount of hormones for the gender and body that you wish to have is very important.
Shifting paradigms of clinical care for intersex folks
For many years, the medical community routinely practiced non-disclosure with intersex patients
The basic idea behind non-disclosure: clinicians purposefully choose to not tell an intersex individual about their variation. The person in question will instead be socialized as either male or female (based on whichever gender “makes more sense” given their anatomy).
The ideology supporting the practice of nondisclosure goes back to the 1950s, when a psychiatrist named John Money at Johns Hopkins said nurture would always override nature.
Why we don’t like it:
Non-disclosure forces intersex individuals to conform to rigid societal standards, compared with the driving principles of medicine, which are beneficence, autonomy, and justice.
Also, clinicians should avoid lying to their patients and should instead tell them the entire truth about their body
Non-disclosure is (thankfully) falling out of favor, instead replaced by the notion of shared decision making when it comes to clinical care for people with intersex traits or DSD
In 2006, a consensus statement came out saying that patients with DSD variations and their families should be told the full truth. This was affirmed again in 2016 update.
Though as Dr. Dalke points out, this movement away from non-disclosure is itself a relatively recent and, frankly, radical evolution in care
Care for intersex folks: areas for improvement
The language and framework that clinicians use when talking about anatomic variations
Medical language can (and should) present the specific biology of intersex folks in a way that isn't pathologizing
For example, DSDs can be framed as variations - just like red hair vs. blond or brown. (Can you tell we are obsessed with red hair?)
Clinicians can (and should) partner with their patients to help them find whatever language feels most affirming to them
The assumptions made by the healthcare system about people’s bodies, anatomy, sex, and gender
Some examples: health forms that only list binary gender options, clinicians that assume a female-presenting individual can become pregnant
An aside to say that these assumptions are damaging for others, too – people who are trans and non-binary and people who have had organs like their breasts, uterus, or testicles removed because of cancer
The physical exam
A person’s body and biology aren’t a spectator sport
Please, kick trainees out of the room!
Ok, so what does it feel like when things are patient-centered?
Patients should feel as if they are in control of every decision that's made in their care.
A provider who's really trauma-informed is going to check to make sure that a person is giving consent to every aspect of a clinical encounter.
A person should feel empowered to say 'no to something or anything at any point during a clinical encounter or clinical decision making and not feel as though they're doing something wrong or they're going to be punished by the healthcare provider for this.
Again, language matters: diagnosis and identity
Maria, our community voice, says it best:
“For most of my life it was a diagnosis and it felt like a diagnosis and I felt different. I just felt different. When I found out I had XY chromosomes, that kind of took me in a new direction - when at your core, you're like, am I a boy? What is a boy? It made me question everything about my identity. And I felt like I sort of started at the bottom to build back up what my identity looks like and where my gender and my sexual orientation, my gender identity, where that all fits in.”
TRANSCRIPT
Maria: I had never heard the word intersex before until, you know, until the age of 24, I had my specific variation, complete androgen insensitivity, but I didn't know what intersex meant. I didn't know that there was a larger intersex community, that other people, intersex people exist.
[QHP THEME MUSIC]
Sam: Welcome to QHP. QHP is a podcast about queer health topics for sexual and gender minorities. My name is Sam. I use he/him pronouns and I’m in Primary Care/Internal Medicine training in New York .
Gaby: I'm Gaby. My pronouns are she/her. And as always, I have the same job title as Sam.
Richard: And I'm Richard Greene, a Primary Care doctor in New York City and the medical director of the Pride Health Center at Bellevue Hospital. And my pronouns are he and him.
Sam: On today's episode, we're going to hear Maria's story and pause along the way to hear from Sue Stred, a pediatric endocrinologist, and from Katie Baratz Dalke, a psychiatrist who herself identifies as intersex.
Gaby: Our goal with this episode is to convey what intersex means is an identity and explain some of the medical variations that fall under the umbrella.
Sam: We'll also discuss why being intersex is sometimes considered a queer health topic.
Gaby: And last but not least, we'll also highlight the common threads between intersex advocacy and LGBTQ health advocacy, including how some folks can identify as both or more.
Richard: We also want to be clear that Maria's story is a jumping off point of many varying intersex experiences. Maria identifies as intersex, lesbian, and queer and shares her diagnosis of androgen insensitivity syndrome. Not all folks with this diagnosis claim intersex as an identity. And there are many other medical variations that come with diagnostic labels that are not androgen insensitivity syndrome. Also Maria shares some specific medical details of her story and anatomy. She does it in an effort to support and educate folks about people who are intersex. It is super not appropriate to ask people to share this kind of information outside of the context of either a relevant medical situation or an intimate interpersonal relationship.
Sam: We also wanted to give our listeners a content warning there'll be a lot of discussions about non-consensual medical procedures during this podcast so if you need to make space for yourself hit pause or do whatever you need to to make sure that this is educational and not harmful for you.
[MUSIC TRANSITION]
Richard: In medicine, we've begun just talking about gender beyond the binary. But very often, we still talk about sex or sex assigned at birth as though there are only two options. Intersex is a general term that can encompass variations of urologic, reproductive, or sexual anatomy that don't appear to fit the binary definitions of female or male. So for example, a baby might be born appearing to have a vagina on the outside, but having testicles on the inside. Their genitals may also be variations of what's typically used for assigned babies as male or female. We sometimes call these differences of sex development or DSD in the medical community.
Gaby: Okay, so big takeaway: folks who carry a DSD are folks whose anatomy doesn't conform to our typical notions of strictly male or strictly female.
Sam: Our community reviewer for this episode pointed out that who does, and doesn't identify as intersex is always political. And too often it's based on how people receive the medical framing of the diagnosis. Some intersex advocate expect that in a few years' time, calling intersex a DSD condition will sound like calling someone's gender identity or sexual orientation, a psychological condition. We'll come back to that later in the episode, but we just wanted to make that framing really clear up front.
Gaby: And with all of this in the back of our minds, we can now get into the basics. Let's get an idea of how frequent these anatomical variations are. To do that, we're going to talk to Dr. Sue Stred.
Dr. Stred: I'm Sue Stred. I'm a pediatric endocrinologist. I've been working as an ally with the intersex community since 2004 in the midst of being a pediatric endocrine provider for about 28 years.
Sam: We asked Sue about how common DSD conditions are –
Dr. Stred: The overall incidence of any variant of sex development from major to minor is felt to be about 1.7% of the population. This is as common as folks with naturally red hair, but within that umbrella there are types of variations which are quite a bit more common than others.
Sam: Dr. Stred went on to explain some of the main differences in sex development that doctors encounter. These differences can show up on a few different levels. There are some that are genetic, like Kleinfelter syndrome or Turner syndrome. Others play out on the level of hormones like congenital, adrenal hyperplasia, her androgen insensitivity syndrome. There are also some DSDs when the structure that gives rise to someone's ovaries and testicles, doesn't develop according to the binary also called gonada dysgenesis suffice to say that there's a variety of different, what we consider medical variations that all might support someone claiming an identity of intersex. I'm going to do the last one again, suffice to say that there's a variety of different, what we consider medical variations that all might support someone claiming an identity of intersex.
Gaby: I'm just going to go ahead and plug our show notes which will be on our website we're going to link a handful of resources that dig into the underlying biology of all of this in much more depth than we do right now and this is super helpful if you just need more details or if like me you're a visual learner.
Sam: Now let's get back to Maria.
Maria: My name is Maria Tridas. I'm 30 years old. I was born and raised in St. Petersburg, Florida. My parents are both medical professionals. My dad is a developmental pediatrician and my mom is a registered nurse. Around the age of two I was diagnosed with complete androgen insensitivity syndrome. After my dad found a lump near my groin, and he noticed that it felt different, you know, it kind of moved. So he, they took me in and they noticed, they found out that I had what they told me was gonadal streaks. But now I'm fairly convinced that they were just undescended, internal testes.
Sam: AIS, or androgen insensitivity syndrome, is a condition where individuals have XY chromosomes. But in individuals with AIS, the receptor for testosterone has a slightly different shape. This means that the hormone can't dock at the receptor, and as a result, people with AIS have testosterone, but their body does not respond to it.
Richard: That means that while the body is producing testosterone, it does not cause the development of anatomic structures we consider typically male, like testes, that descend into a scrotum, the shaft of a penis, and the prostate.
Gaby: While that's a beautiful explanation of AIS, it doesn't sound like that's how it was laid out for Maria. Instead her interactions with doctors seem a little bit different.
Maria: When my parents took me in for my initial consultation, when he found the lump, and I had that first surgery, this was explained to my parents, and this is explained to so many other intersex peoples’ parents, is that the internal testes or the gonadal streaks have a high risk of becoming cancerous. And that's just not true. I'm, I'm not a medical professional, but everything I've read about it, says it's not true. The doctor told him to put me in a dress and everything would be okay.
Gaby: At this point in the story, Maria is only two years old, but already so much has happened.
Sam: For starters, she's had a gonadectomy. The gonads, or the structures that give rise to testicles or ovaries, were removed.
Gaby: And even beyond the strictly medical, she's already been the focus of so many cultural and social assumptions. For example, she has XY chromosomes, but because of the appearance of her external genitalia, she's assumed to have a female gender identity and a strictly binary female sex.
Sam: So the story goes on. That was not the end of medical interventions that Maria experienced.
Maria: When I was eight years old, I had a repositioning of my urethra and also some work on my labia as well. I started hormone replacement therapy around 11 or 12.
Sam: When Maria says hormone replacement therapy, she's referring to the fact that she was prescribed a pill form of estrogen.
Maria: All during this time, you know, I was told that I didn't have female reproductive organs. The hormone replacement therapy was something I needed to keep me healthy. You know, no language around the specific type of intersex variation that I had was discussed, until I was 18. And that's when I found out that I had complete androgen insensitivity syndrome, they told me that I had, XY chromosomes, and that sort of began the journey of my true discovery into my intersex identity.
Sam: Okay, so at least for myself, I want to clarify the timeline here. Maria was the only told about her XY chromosomes after she'd had an extensive list of medical interventions. Six years after taking hormones and after several surgeries. Unfortunately this experience of nondisclosure or not having your medical diagnoses and history told to you is not unique among intersex patients. There's a long history of it within medicine.
Richard: The ideology supporting the practice of non-disclosure goes back to the 1950s. A psychiatrist named John Money, working out of Johns Hopkins, said nurture would always override nature.
Gaby: And in fact, it's only in the past few years - like, the early 2000s - that people have started to pivot away from non-disclosure.
Dr. Dalke: The notion of shared decision making when it comes to clinical care for people with intersex traits or DSD is itself a relatively recent and frankly, very nearly radical evolution in care.
Gaby: That's Dr. Katie Dalke speaking.
Dr. Dalke: My name is Katie Baratz Dalke. My pronouns are she, her and hers, and I am a physician, a psychiatrist by training. I am also a parent of two children and I am an intersex woman. I have complete androgen insensitivity syndrome. I do identify as queer. My clinical practice as a psychiatrist focuses mostly on working with adolescents and young adults. And my practice is really devoted to taking care of people who have diverse experiences of sex and sexuality and gender.
Gaby: Dr. Dalke says that these changes to the practice of nondisclosure really started in 2006.
Dr. Dalke: In 2006, a group of international, experts - in air quotes, in endocrinology and urology, and one community member came together and wrote a consensus statement regarding the clinical management and evaluation of folks with intersex traits or intersex conditions.
Richard: This paper from 2006 was a big deal. Not only did it advocate for the medical community to move away from the practice of nondisclosure, that's actually where the vocabulary of differences of sex development first came on the scene.
Gaby: Right so what Richard's saying is that initially when the 2006 paper came out, the term DSD stood for disorders of sex development instead of differences in sex development and that first term was considered much more stigmatizing by the intersex community.
Sam: Maria's experience with the healthcare system predates these paradigm shifts.
Gaby: Yes – but to be fair that may not be the only reason her doctors didn't tell her about her AIS diagnosis. After all some doctors may not have even heard about this paper – the 2006 paper – or the word intersex at all in the first place. Or if they did know the word, they certainly didn't mention it to Maria.
Maria: Of all the doctors I went to my entire life up until 24. I had never heard, they never told me the word intersex, you know? It was always my specific variation that we discussed. I don't think it really mattered to them what type of variation of intersex that I was. It was more so like, they just had to figure me out. Doctors were so – perplexed by meeting, seeing an intersex person. You know, I went to an endocrinologist that had never heard of it at all.
Sam: In other words, Maria was never exposed to the possibility that some people with her medical diagnosis also claim intersex is an identity.
Gaby: And though Maria first received her diagnosis in a doctor's office, she was left to do a lot of the processing and identity building on her own.
Sam: She puts it very succinctly.
Maria: We're also sort of creating an identity for ourselves, you know, because we've been silenced for so long.
Gaby: We asked Dr. Stred to talk us through the points in someone's development. When an intersex trait may come to medical attention.
Sam: And just to pause, if there's ever a magic school bus reboot, we should probably do an episode with the following journey.
Dr. Stred: There are a few intersections of an individual's life where an intersex variation might be noted. The first is in the prenatal timeframe. A pregnant woman may have a certain form of genetic testing looking for something else altogether, something that might be inherited in her family, and an intersex variant is noted.
Sam: Okay. So two ways a pre-birth diagnosis might be made. The first is through genetic screening and some of the chromosomal conditions may be noticed. The second is an ultrasound for a fetus where they may see some of the fetal organs are not developing in a binary way.
Dr. Stred: A rather common time for an intersect variant to be noted is when an infant is born and the genitals do not look typically male or typically female. Sometimes that difference is very subtle. Sometimes that difference is really quite dramatic
Gaby: And just an FYI we have another episode this season that talks about conditions that cause outer genitalia to not meet binary expectation, so look out for that.
Sam: For now, what we want to get across is that birth is a very common time where various DSDs are diagnosed and Sue estimated that about half of DSD diagnoses are made at the time of birth.
Dr. Stred: Another time when an intersex variant may be noted is when a girl has a hernia or another mass in the inguinal region where the body meets the leg. Many of those individuals have androgen insensitivity syndrome. So when a girl is found to have a, a mass in that area or undergo surgery and the testicle is found, the diagnosis of androgen insensitivity syndrome is made at that time.
Gaby: So that's actually precisely what Maria experienced. Her father noticed a mass, which Maria believes now to have been one of her testicles or gonadal streaks as she called it.
Richard: But like we said earlier, not all intersex folks share Maria's experience. Some get diagnosed much later in life.
Dr. Stred: Many adults with differences of sex development indicate that they're intersex variant was first noted at the time of expected puberty. It is not uncommon for that to be the timeframe when an intersex condition is noted. And the last common age frame is when adults are evaluated for infertility and it is not uncommon that an intersex variation might be noted at this time.
Gaby: Okay, so let's do one quick recap of the various points where someone's DSD may be diagnosed.
Sam: An individual or their family may learn that they have a DSD at a few different time points before birth on genetic screening or fetal ultrasound at the time of birth and childhood, often as part of the medical investigation of a hernia or an abdominal mass.
Richard: And sometimes we find gonads during abdominal surgery randomly, maybe they haven't developed. Sometimes we also start a workup because people who expect to get pregnant, aren't getting pregnant the way they expect to.
Gaby: Let's pause again, to be clear, not every individual who carries a DSD will identify as intersex. Hopefully this is becoming a familiar phrase to you by now. In fact, two folks with the same medical diagnosis can have totally different experiences around their body, their biological sex, and their gender identity. And all of these may play a role in determining whether someone chooses to identify as intersex.
Richard: But Maria claims intersex as an identity. Let's hear how she navigates the duality between a medical diagnosis and the identity that's related to it.
Maria: I don't like to pathologize like my identity. So I don't like to say that I have a condition and definitely not a disorder when I discuss my identity. I often say I have a different gender or sex variation. When I'm talking about the spectrum of sex development, I discuss different variations. Because intersex people are naturally occurring individuals in society, we just have like a different variation of sex characteristics, you know? We don't fit the typical script of what society says is male or female. we're just a different, what I like to say, variation of that.
Gaby: Dr. Dalke had a nice follow up to that.
Dr. Dalke: the other thing that I'd like to say about this, like, tension between medicalizing and normalizing language is that I really don't think that they're necessarily mutually exclusive. I think there are, there are ways of being able to frame this for a person to say, I have this particular variation that happens to be called this. Right. Um, and so we can do some of that work of demedicalizing it ourselves, not necessarily by rejecting a diagnosis or rejecting medical language or medical information, but by the way that we're internalizing it and metabolizing it ourselves.
Richard: What I love and want to amplify in the quote is how medical language can be presented in a way that isn't inherently pathologizing. For example, DSDs can be understood as variations like red hair. Medicine can be seen as the way of bringing informed understandings of that variation.
Maria: I'm definitely fighting for an identity that does come with medical care, but what identity doesn't come with medical care. In an ideal world I think we would just be recognized and not have to be diagnosed, you know? I think just othering or pathologizing or, you know, saying that you have a disorder –I think the connotation – it implies that there's something wrong. And generally there's not necessarily something wrong, you know?
Gaby: You know, I really appreciate this way of framing things. Where variation is a healthy normal part of having a human body and there's no reason that this needs to become medicalized. But unfortunately we don't see this kind of framework used often.
Sam: We don't see variation in genitalia or sex organs as variation. In fact, we see it as something that is incompatible with our social understanding of bodies, and therefore it needs to be fixed medically. Our social and cultural regulation of sex – meaning the way we police what bodies should and shouldn't look like – end up spilling over into how medicine sees intersex bodies.
Richard: Dr. Dalke also spoke to how, just because a doctor is involved doesn't mean the patient's experience or their goals shouldn't be in the driver's seat.
Dr. Dalke: The goal of care for someone with an intersex trait is for that person to be healthy for that person to be physically healthy, for them to be emotionally healthy, for them to be psychologically healthy, and sexually healthy. And the person themselves should decide what that means for them. Our doctors don't get to decide what makes us emotionally healthy or what makes us psychologically healthy. They may have some experience and some data that they can offer to us, but at the end of the day, that decision is really up to us.
Gaby: In other words intersex folks should be able to pursue the types of care that are best for them and their individual health goals for some that may not include medical intervention but for other folks medical intervention can be desirable and can have a positive connotation.
Sam: As Dr. Stred points out, hormones can be used to affirm someone's gender identity while also ensuring that their body develops and works in a healthy way.
Dr. Stred: Our body shapes, the depth of our voice, the amount of facial hair and body hair that we grow, and very importantly the strength of our bones and muscles are dependent on the sex hormones that usually start being produced in tiny amounts at age five and six, and more obviously, between the ages of nine and 13 to sort of start proceeding through puberty. So hormone treatments are important for the psychological health and addressing the distress that those individuals might have for the shape of their body and the internal health of their body in the gender in which they are living or would prefer to live. Because there are 10 to 15% of individuals with an intersex condition, who by the time of puberty, identify with the gender, other than that which they're raising and a few who identify as non-binary. So stressing the importance of having the correct amount of hormones for the gender and body that you wish to have is important.
Richard: So there are all these ways that medical care can be important to intersex people, ways that medical care can be affirming rather than making them feel like they're just a diagnosis or that something is inherently wrong with their bodies.
[MUSIC TRANSITION]
Maria: My transition into medical care as an adult has been kind of tricky. You know, I've had lots of uncomfortable questions, terrible bedside manner, pretty much everything you could think of.
Sam: Sometimes Maria’s AIS comes up and other times it doesn't. Either way the activation energy or emotional labor that she has to go through to seek out healthcare can be really taxing.
Maria: Every doctor who doesn't know me, I get asked when was the last time I menstruated and, you know, then I'm like, “I don't get a period” is usually my first answer. And then they ask, “why”? I'd say “I don't have female reproductive organs” and they'd be like, what?
Richard: This isn't even the only place medicine blunders. Clinicians routinely make assumptions about people's bodies based on their sex or gender. The same thing can happen for people who are trans and non binary and for people who have had organs like their breasts, uterus, or testicles removed because of cancer.
Gaby: Right. Totally.
Sam: This is one way in which LGBTQ and intersex advocacy and healthcare spaces overlap. That all these communities are frequently victims of the same set of cultural assumptions around body, gender, and sexual orientation.
Richard: That moment of surprise and startle, it can be really traumatizing, especially when experienced over and over again at nearly every clinician's visit.
Gaby: And I think it's worth noting that the erasure that Maria and others experience at the doctor doesn't just come from the actual behaviors that the clinicians they're interacting with. It's hardwired into the structures of how our clinics run. Clinics were even the paperwork that people fill out when walking into an office doesn't acknowledge one’s identity or even make room for that identity.
Maria: Now I get a kick out of really obnoxiously scribbling out male or female, and like writing really big, capital letters “INTERSEX”.
Gaby: When we asked Maria what would make her care more affirming her answer is really clear.
Maria: I want doctors to be a little bit more empathetic, to seem like they know about me, they've read my chart. That they just understand, you know, who I am at least like biologically. I feel like so much we’re met with the stigma that they are presented from society's point of view. I become less of a person - if that makes sense - and more of an unknown thing that needs to be fixed.
Sam: The end result of empathetic and affirming care is that patients feel like they are in charge of their care and they have autonomy over it.
Dr. Dalke: They should feel as if they are in control of every decision that's made in their care. And not just the really big decisions like, you know, whether or not a person should have surgery or choose between two specific medications. But they should, they should feel in control of the smaller parts of their care. Like whether or not they have to completely get undressed for an exam or whether they can remove one article of clothing, just for the portion of the exam. That's really necessary for that. Too many of us have gone along with medical care because we've been told that we have to, and working with a provider who's really trauma informed is going to check to make sure that a person is giving consent to every aspect of a clinical encounter and is also going to check in with that person and see how things are feeling for them as they move through that clinical encounter. The other really key part of what trauma informed care feels like is that a person should feel empowered to say no to something or anything at any point during a clinical encounter or clinical decision making and not feel as though they're doing something wrong or they're going to be punished by the healthcare provider for this.
Richard: So people engaging with health care can make choices that are comfortable for them as a patient, we have autonomy and the burden of convincing us to go along with a physical exam or take a medicine, or have a procedure falls to the clinician who recommends it. You never have to do something just because the clinician says so.
Gaby: Dr. Dalke also mentioned that folks should know it's okay to kick a trainee or team of trainees out of the room.
Sam: Right. And if you're someone who's in that setting and you feel guilty about it, please don't, you should know that med students have a burning pile of flashcards in their pocket that they'll be grateful to have any time to do.
Gaby: We also want to let people know who might be in the situation of having to ask people to leave the room during a medical encounter that that can be really overwhelming, but especially for individuals who may already feel like the objects of medical curiosity or worse prior trauma. The finding or advocating for affirming care can be challenging for intersex folks. Maria also has some success stories.
Maria: When I met my doctor here in New York she treated me like someone who had options and who, you know, we needed to find the right fit for me. I felt centered as an individual, you know, as a whole individual, rather than like a disorder or something that was wrong.
Sam: Maria pointed out that even if someone gets a diagnosis from their doctor, she also wanted them to provide access to the intersex community.
Maria: I wish that I was told that there were other people on the spectrum of sexual development, you know, that were like me, that there were resource groups. Just provide adequate information.
Sam: We took Maria's experience to Dr. Dalke who had some advice for what affirming language might sound like and how this might provide access to the intersex community, but also respect people's ability to claim that identity.
Dr. Dalke: It is very possible for providers to say, you know, you're, you're going to walk into this space. Some people will use this language. Other people will use this language. It's really up to you to determine what, which language feels the most accurate for you. And it's the most helpful for you and part of what we can do together, sort through that and explore it together.
Richard: And everyone who identifies as LGBTQ knows that language matters.
Dr. Dalke: One of the other benefits to having specific language is that it does help people access a specific community. And I think this is really important for people with intersex traits or with DSD because, number one, specific intersex traits tend not to be super common. And also number two, medical practice has been extremely effective at, uh, essentially driving us underground, such that it is still very difficult to connect with other people who have any sort of intersex spectrum variation. The other reason is that intersex support groups and DSD support groups are able to provide people with information that providers cannot. So for example, people like me who have complete AIS, many of us are interested in vaginal dilation and the recommendations for most providers for vaginal dilation, essentially boil down to, you know, here's a series of dilators, go to the drug store, get some lubricant and do this a couple times a week. And it is way, way more complicated psychologically and physically and emotionally for people. And one of the things that we're really good at in the support community is helping people work through the challenges of doing something like that and, and work their way towards something that, that helps them achieve their goals.
Sam: We're going to rewind Maria's story to just before she left for college. She talks about what Dr. Dalke is speaking to: the importance of having her healthcare provider be a gateway to a community, not just someone who gives a diagnosis.
Maria: When I was 18, the reason that I was told that I had XY chromosomes and went to a new doctor was because they wanted to make sure before I went to college, that, I could, I could have sex with men, essentially, is what they told me.
Richard: Oof, this is one of the many, many ways that the assumption that someone is straight impacts intersex folks, which we'll talk about more in our next episode. After 16 years of medical care, the only reason that Maria is finally told about her XY chromosomes is so she can be more, quote, prepared to have sex with men.
Maria: I went to college and wasn't really interested in that, but also didn't know I was interested in women and then, you know, sort of started going down that rabbit hole and really came into that identity around 21. I moved to New York and got a job at a pretty liberal publication doing some editing work and it was a live show. And I was listening to the live show and an activist named Pidgeon Pagonis was on. I was interested in all of the queer live things that came on and, you know, I heard this person talking and I was like, everything they're saying is, describes me. But I had never heard the word intersex before until, you know, until the age of 24, I had my specific variation, complete androgen insensitivity, but I didn't know what intersex meant. I didn't know that there was a larger intersex community, that other people, intersex people exist in. Because for so long, doctors, tell parents to keep it quiet, you know, so many of intersex people's stories begin with, you know, this is not something you talk about, you hide this. Just meeting another intersex person, sort of solidifies your own identity.
Sam: I asked Maria why she claims and intersex identity remembering that not everyone does that.
Maria: So for most of my life, it did, it was a diagnosis and it felt like a diagnosis and I felt different. And I, I did, I felt like, you know, I just felt different. And when I found out I had XY chromosomes, you know, that kind of took me in a, in a new direction, you know? And it was like, how does, like, you know, when you're like at your core, you're like, am I am well, am I a boy? Like, what is a boy? It sort of made me question everything about my identity. And I felt like I sort of started at the bottom to build back up what my identity looks like and where my gender and my sexual orientation, my gender identity, where that all fits in.
Once I did have access to that language and once I found community, and that's why I can't stress enough, how, like, why I think it's important for doctors to give those options. You know, that's where I felt like I was able to form my own, my own identity, you know, and to have access to the language that I never had with medical professionals.
Richard: As we've said earlier in the episode, Maria's experience is not monolithic and does not represent all intersex identities, but that was her journey from the slowly parceled out disclosure of her personal medical information to claiming the identity of intersex.
Gaby: And I think to that point, it's worth perhaps asking ourselves why is it that a handful of different physical variations with different lived experiences should be united under a single umbrella term of intersex identity. And I think Dr. Dalke gives a really really beautiful answer to this question.
Dr. Dalke: One of the perils of taking an excessively medicalized approach to these variations is breaking things down into discrete categories, which you know, frankly like change a lot over time. And sometimes we think there's one category and then it gets broken into multiple categories as, as research progresses. It gives us this false sense that there is something very different about each of these things from each other.
And that to me, the consequences of thinking like that, to say that congenital adrenal hyperplasia is totally different than androgen insensitivity syndrome is totally different than gonadal dysgenesis is missing one of the biggest points, which is that there is an entire, not even just community, but population of people whose bodies exist on this spectrum of sex development and who share common experiences related to having a sexual body that's develops in a way that's a little bit outside of the binary.
So when we, when we're thinking of things as being really discrete, you know, the benefit of that is we can talk about, you know, a person specific physical anatomy features, or we can talk about the specific medications that someone might need to take to stay healthy, but, but we're cutting ourselves off from thinking expansively and recognizing that we share experiences that are very, very common with, with a lot of other people. And I'm actually feeling myself, get a little choked up, as I say that, because that has been the goal of medical treatment for a long time, which was to say, keep this to yourself. You're the only person like this with this thing has been to cut us off from each other and to keep us in the dark and to keep us underground, to erase us. And so to think about the commonalities we share.
Is a way of pushing back against that and making ourselves, not just visible for sociopolitical reasons, but connected because so many of us struggle with feeling isolated and cut off from people, because a lot of the other people in our lives can't understand what this feels like, but, I can definitely understand someone else's intersex experience even if it's not exactly my own, like better than someone who doesn't have any kind of intersex experience at all.
Richard: So many intersex folks have had medical care that ranges from hard to access and filled with lies to outright traumatic and invasive. Dr. Dalke’s point speaks to the reason many folks claim an identity, that there is a shared experience perspective on navigating the world. That stems from the way society limits the permitted variations of physical bodies.
Gaby: So before we close out this episode completely let's recap a little bit
Sam: DSD stands for differences in sexual development. And it is a grouping of medical diagnoses, which some people consider variations. And these can all play out at the level of chromosomes, hormones, or entire organ systems. Some individuals claim a diagnosis as it helps them understand the specifics of the variation they have. And other folks just call their bodies a variation and avoid anything that's pathologizing like the language of diagnoses. Intersex identity itself is not anything medical or pathological. It's a way that people experience the world, and therefore claim as an identity.
Richard: And let's acknowledge that we need to move from non-disclosure as a paradigm, which forces intersex individuals to conform to rigid societal standards, compared with the driving principles of medicine, which are beneficence, autonomy, and justice.
Sam: What Richard is saying is that medicines should stop lying to patients, should tell them the entire truth about their body and that moving forward, we should do everything to make sure that the patient's ethical wellbeing is what is centered in their care.
Richard: Absolutely. And when we do this affirming language and access to affirming care for the intersex community becomes obvious and necessary.
Gaby: And with that back to Maria who sums this all up best with her own words.
Maria: I am intersex. And that is like one of my foundations and that affects every part of my life and how I interact in the world and how I move through the world. And I'm like, so thankful I am intersex because I feel like I have a perspective that not a lot of people are able to get.
[QHP OUTRO]
Sam: QHP is a power sharing project that puts community stories in conversation with health expertise to expand autonomy for sexual and gender minorities.
Richard: We would like to thank our guests Dr. Katie Dalke, Dr. Sue Stred and Maria Tridas.
Sam: We would also like to give a big shout out to InterACT and Hans Lindahl who served as this episode's community reviewer.
Gaby: If you have questions comments or feedback on this episode please let us know you can reach us on Twitter or Instagram, our handles are @queerhealthpod. Or, you can reach us on our website www.queerhealthpod.com, where you can let us know what queer health questions you want us to bring to the experts for you.
Sam: And thank you to Lonnie Ginsberg for composing our theme music.
Richard: Opinions in this podcast are our own and do not represent the opinions of any of our affiliated institutions. And as always the content we discuss here is meant to engage and aluminate, but without knowing your personal medical history, it's not intended as medical advice, please consult with your clinician about your personal medical needs and questions.