Hypoactive sexual desire dysfunction in the ICD-11

Transcript

Courtney: Hello everyone and welcome back. My name is Courtney. I’m here with my spouse Royce.

Courtney: Together we are The Ace Couple, and today we are digging into the ICD-11 and the DSM-five to talk about a couple of diagnoses under the umbrella of sexual dysfunction and some of our concerns with them. Now, if you have not listened to our episode from last week, I highly, highly encourage you to do that. First, because today we’re actually cracking open these books and looking at the text as it exists right now in these diagnostic manuals. But I do think the history and the context from which these diagnoses came to be and how they came to be in these books is incredibly important to the conversation. And our last episode dug into the history of these and other diagnoses over time that by another name could be asexuality. But for those of you who have already listened to that episode, let’s plow on ahead, shall we?

Courtney: First, I wanna take a look at the International Classification of Diseases, 11th revision, or the ICD-11, which calls itself the global standard for diagnostic health information. This is the most recent published guide that still has the diagnosis of hypoactive sexual desire dysfunction. Verbatim from the description: hypoactive sexual desire dysfunction is characterized by absence or marked reduction in desire or motivation to engage in sexual activity. As manifested by any of the following, and we have some examples we’ll go into here in a second.

Courtney: One thing I immediately want to point out, and I have been critical of this definition of asexuality for quite some time, but if you’ve been in and around online ace spaces, if you’ve engaged at all in the ace discourse, then there’s an extremely strong possibility that you’ve encountered someone emphatically insisting that the definition Asexuality has only to do with sexual attraction. And this is surely not the episode to go into the difference between attraction and desire, or whether or not there is a difference, or how different people may define what these words are. But there are, for example, some aces out there who do enjoy engaging in sexual activity for whatever reasons are. their own. Perhaps it is because they genuinely do just enjoy the feeling, but they don’t feel specific attraction toward individual bodies, the partner they’re engaging in this with.

Courtney: They don’t sort of have that like, “Yes, you are sexually attractive to me,” but the act itself may still be something that they want to do or seek out. Personally, this is not relatable to me. That is not my corner of the ace spectrum.

Courtney: And make no mistake, I am not here to say that those people are wrong or that those people are not asexual or that their experience is not valid. None of that is my intention.

Courtney: I think there is absolutely space for that segment of the spectrum under the umbrella that is asexuality. But when we so heavily advocate for this definition, and I’m, I’m not even gonna say this definition, any singular definition of asexuality. If there is a staunch push to say this is the one correct definition, I think that is going to be harmful and wrong. It will leave someone out. It may have sociopolitical ramifications that many people will not be attuned to.

Courtney: And I have seen incredibly bad faith actors use that definition, and in their minds it’s, you know, you look at an individual and you are sexually attracted by them, you you may be aroused by them, that is the attraction element, the desire is whether or not I personally want to have sex, and some people separate those two things out. I’ve seen bad faith people with that definition say, well, this HSDD isn’t talking about asexuality because they’re talking about desire, not attraction, and asexuality is about attraction. And I swear to you, I think I’ve said it before that we’re gonna do this episode, but one day an episode will release on this podcast that is called Every Definition of Asexuality is wrong, and we’ll go through every definition and I will talk about why it is.

Royce: I mean, what you just hinted at there was that in common language, no one can agree on a precise definition for anything, particularly not words of feeling or experience like that. And so when you try to say, “Well, this person that wrote this diagnostic manual is using this word in the exact same way as this person in my community is,” it, it doesn’t work like that. You can’t use language as a, a definitive factor, a limiting factor like that.

Courtney: You never can, especially when you bring in these systems that have power over others. The medical system, the psychiatric system can impose power. We cannot use intra-community language and understandings and discourse to legitimize these power structures.

Courtney: It’s much the same way um we’ve talked about colloquial uses of consent versus the legal definition of consent. Once you get into the legal system that has its own set of powers and authorities, the words take on much deeper context.

Courtney: And moreover than that, I think a lack of desire is something that is equally important to discuss in the asexual community. Some disagree with me, but as a desireless asexual myself, that is a fundamental component of my brand of asexuality. But taking it for the language that it has, what are the examples it gives for how this absence of desire can manifest. one, reduced or absent spontaneous desire, which they define spontaneous desire as sexual thoughts or fantasies. So right off the bat there, there is literally a psychiatric sexual dysfunction on the books right now that is diagnosable where they say if you don’t have sexual thoughts or fantasies, you have a disorder. Compare that to the common asexual lived experience where if we aren’t outright told by society or individual people that we are broken, that something is wrong, that we need to be fixed, countless asexual people out there have grown up feeling this about themselves just in comparison to the people around them saying, I’m missing something that everyone else seems to have.

Courtney: I felt like I was broken is maybe the number one phrase that I hear from other asexual people to describe their experience before they found the language of asexuality, before they engaged in the asexual community. In some instances, their very heartfelt uh correspondence before they found our podcast before whatever the defining moment was where they came to understand their state of being as a valid sexual orientation, just another iteration of what it could look like to be a happy, healthy human. “I thought I was broken” is the number one phrase.

Courtney: Following on, example two: reduced or absent responsive desire. to erotic cues and stimulation. Now, responsive desire, for sure, in my mind, reads like physical arousal. Is that how you understand it in this context?

Courtney: Like, when exposed to erotic cues, do you get the erection we suspect you should have?

Royce: Yeah, that’s probably the intent. Before you had said that, I had originally interpreted it as a like desire or need to do something about a state of arousal, like seeing something and feeling the need to masturbate or something like that. But you’re probably right that they’re just intending arousal. But arousal can happen for so many reasons. Sometimes it’s just hormone o’clock and that happens, you know.

Courtney: Yeah, or they’re very literally are so many asexual people who just, you know, what? You find this sexy? Like, I, I don’t understand.

Courtney: This is not registering to me as a sexy thing. And the third and final example they give for a way HSDD can manifest is inability to sustain desire or interest in sexual activity. Once initiated. Which we are of course looking at this through an asexual lens and will continue to do so. I suppose perhaps there is a theoretical, completely allosexual person out there who does experience that primary attraction. They are sexually attracted to an individual. They do have a desire to engage in activity, and perhaps once the sexual activity starts, it is just tanking.

Courtney: It’s not working. Theoretically, this could be a distressing thing for that person because they would like to carry this out to fruition and it just doesn’t seem to be happening. But in all these examples we gave, if that is the one example of someone where I’m like, yeah, there, that could maybe be an issue we could do some research on maybe about whether or not this could be a medical concern. But I’m thinking about like a quintessential asexual experience for a lot of people who do try to perform allosexuality at some point in their journey because this is just what’s expected in relationships.

Royce: Yeah, the biggest problem with walking through these scenarios is that from an outward observer, the same thing can happen for multiple different reasons internally. So take the allo person who wants to be involved in this that has some kind of thing going on that would normally be characterized as, you know, you know, some kind of erectile dysfunction. Like they want to do the thing, but they can’t do the thing for whatever reason.

Royce: Compared to some of my experiences where I’ve been with an allo partner and partway through have just gotten bored.

Courtney: That’s the experience I’m thinking of. There are so many aces I’ve spoken to where they’re like, yeah, I personally wasn’t repulsed by the idea of sex like many aces are. So I was in a relationship with someone who wanted it.

Courtney: So I thought, yeah, okay, let’s try it. But once they get in into it, they’re like, no, this actually is just not really my thing.

Royce: And there’s this thing that happens where, at least for me, if whatever I’m doing is mentally engaging, it can feel very physically stimulating. But if my mind is wandering and I’m bored, everything just kind of numbs.

Royce: And it’s a very stark difference. And yeah, an outside observer would characterize it that that as that scenario, but that’s not really what happened. What what happened was I checked out and my mind started wandering.

Courtney: And I think from the viewpoint of the sex therapists in the ’70s who started concepting these disorders, they would say that checking out is fundamentally wrong. You should not do that because sex is so exciting and enjoyable.

Royce: But I led with, “But I was bored.”

Courtney: So right off the bat, based on that description and these examples, almost every asexual person I know, when sitting in front of the wrong psychiatrist, could be diagnosed with hypoactive sexual desire dysfunction. And it goes on to say that the pattern of diminished or absent- and that’s such a fascinating thing too, because I’m going to use this as another case in point for why even though I think the definition of asexuality is little to no sexual attraction is itself a little flawed, if I’m trying to give a shorthand definition to someone, I’ll probably say little to no sexual attraction and or sexual desire, because I think that covers a few more bases.

Courtney: It’s still limited. They are all gonna be limited.

Courtney: This is just the nature of identities. Describing an identity in perfect detail is impossible. But there are some from within and even outside of the asexual community who will look at that little to no and be like, well, if you still have some sexual attraction, clearly you’re not asexual. What is that little to no?

Courtney: And that is not a train of thought we agree with here, just by its own merits, because graysexuality, demisexuality, different sides of the ace spectrum might have a different firsthand relationship with what that little sexual attraction means to them. But we have it right here in a clinical diagnostic setting where they are defining a pattern of absent desire or diminished desire. So they’re not even just outright saying if you have no desire “You’re wrong, you’re broken, this is diagnosable, this is a dysfunction.” They’re saying, “If you don’t have enough, if you don’t have as much desire as we think you should have, we’re slapping a diagnosis on that baby.”

Courtney: So that is, in my opinion, one of the most specific things we can point to in society to say, yes, a power structure that can do harm to us. is also looking at people who may identify as graysexual. It also includes people who may identify as demisexual.

Courtney: There is a societal standard that has been encoded in a diagnostic manual for how much sexual desire is the right amount or a healthy amount or a normal amount, and they’re saying anything less than that is a problem. The language here being the pattern of diminished or absent spontaneous or responsive desire or inability to sustained desire or interest in sexual activity has occurred episodically or persistently over a period at least several months and is associated with clinically significant distress.

Courtney: I’ve also heard bad faith actors cite this line, “associated with clinically significant distress.” They will argue, “No, no, no, asexuality isn’t diagnosable.

Courtney: It’s not in the DSM. It’s not considered a disorder. No medical professional.” professional thinks this is a problem.

Courtney: Uh, I laugh. Laughs in, “Our dentist offered us conversion therapy.” But clinically significant distress. People may argue someone who is an out and proud asexual person is not distressed by their absent desire.

Courtney: So this isn’t someone we would diagnose and try to help. We’re just trying to diagnose and help people who are distressed by it.

Courtney: But uh, two factors there. Much like we talked about in our episode about how to not be acephobic, let’s treat asexuality as a sexual orientation. And if you say something about asexuality, does it still feel okay to say if you substitute any other sexuality for it? We can use kind of the same theory in situations where people are trying to invalidate real experiences and concerns we have in medical settings. And when someone says, well, someone who’s asexual isn’t going to have like clinically significant distress by it. All right.

Courtney: Have you ever met an ex-gay? Have you ever, have you ever met a gay person who at some point in their life, even if that is no longer the case, was distressed by it. It happens all the time.

Courtney: People with minority sexualities are often distressed at one point or another in their life. Our argument is that the fact that someone is asexual is not itself fundamentally distressing, just like someone who is gay or bi, the list goes on. That fact about themselves is not fundamentally distressing.

Courtney: But we do live in a bigoted society. We live in a society that is geared toward all of these normativities. And if you are not cisgender, allosexual, heterosexual, there are going to be unique challenges for you, either systemically or on an individual basis. There can be distress because perhaps society is telling you you can’t live a good, happy life. This is what a good, happy life looks like, and it’s unattainable for you.

Courtney: It can be associated with distress because maybe our family do not accept us. Maybe our friends and community around us do not accept us.

Courtney: Maybe it’s distressing because we have medical professionals telling us that there’s something wrong with us. Asexual people are at a higher risk of being offered conversion therapy. Conversion therapy, which is not therapy. Conversion practices of all types are known to be torturous, are known to be significantly distressing.

Courtney: Asexual people are at an increased risk of facing intimate partner violence. Asexual people have faced Corrective sexual assaults. I do know sexual people who have been kicked out by their families, who have been assaulted by their parents. All of these things are significantly distressing.

Courtney: The asexuality is not the problem. The allonormativity in society and the bigotry associated with it. is the problem.

Courtney: So then they break out hypoactive sexual desire dysfunction into multiple categories. And this is further proof why, even if we gave every single benefit of the doubt, which is overly charitable, and we shouldn’t have to do that, of the theoretical allosexual person who does want to uh see a sexual encounter to fruition and they just can’t for whatever reason that is, that is not fundamentally the person that they were thinking about when they put this in the book, because the very first subcategory of hypoactive sexual desire dysfunction is lifelong and generalized. The description being, the person has always experienced hypoactive sexual desire dysfunction from the time of initiation of relevant sexual activity. and the desired response is currently absent or diminished in all circumstances, including masturbation.

Courtney: So this is not a situation of someone has been allosexual their entire life and all of a sudden like a switch flipped off and now there are some problems. This is someone who has never had that sexual desire.

Courtney: It is completely absent or diminished all of the time, their entire life. Their entire life. And they also either don’t masturbate or they don’t masturbate as much as we think they should. This is asexuality. This is one example of what asexuality can look like. I don’t know any other way uh to say it than that.

Courtney: Hypoactive sexual desire dysfunction, lifelong and situational. is also a really weird one to me because it’s like so vague as to not actually be meaningfully important in my mind. Because the description is the person has always experienced hypoactive sexual desire dysfunction from the time of initiation of relevant sexual activity, and the desired response is currently absent or diminished in some circumstances. With some partners or in response to some stimuli, but not in others. Okay.

Courtney: Like I, you, you know what I uh what I unironically immediately think about when we were combing the Dead Bedroom subreddit and they had their own little like subreddit language and they start saying uh oh that person’s just low libido for you. For you.

Royce: Yeah. That sentence had enough variable words that it’s basically like, well, if you feel like something’s wrong.

Courtney: Right. And truly, if someone’s like, I don’t understand, I usually have a flourishing sex life, but with this one partner, it’s just not happening. And let’s say you are talking to a medical professional, is slapping on the diagnosis of lifelong situational HSDD actually going to help anybody ever? No.

Courtney: It’s so vague and so like in response to some stimuli but not others. What stimuli? Are we just talking about sexual preferences at this point? Well, my partner likes to do this, but I don’t particularly like that, so I don’t respond to that. That’s diminished desire to some stimuli but not others. What are we doing here?

Courtney: Then we have HSDD-Acquired Generalized. The onset of HSDD has followed a period of time during which the person did not experience it, and the desired response is currently absent or diminished in all circumstances, including masturbation.

Courtney: We have its uh counterpart, Acquired and Situational, which just copies and pastes the same. In some circumstances with some partners. In this situation, but not in that one.

Courtney: And look, I’m sure there are some folks here listening who are still very much of the “born this way” mentality. “Born this way” was, and for some people still is, a very empowering sort of mantra for “I have always been this way, this is just how I am, my sexual orientation is.”

Courtney: Not changeable. It’s not an option. It’s not a decision. I was born this way. I think I heard a song about that once.

Courtney: And folks with this mentality may say, well, you know, perhaps we should remove the lifelong iterations because if this is just how someone was born, that’s just their orientation and that can’t change. So maybe when talking about lifelong situations, that’s the asexuality and that’s the problem. But if someone is a sexual being and all of a sudden at some point in their life they no longer are, or they are less so than they used to be, then maybe that is a medical disorder.

Courtney: Maybe that is something we should look into. Maybe that is diagnosable or can be fixed.

Royce: Well, less so than they used to be is just called aging.

Courtney: Yes, some may argue.

Royce: Basically everyone has a drop in hormone levels as they age.

Courtney: And that’s where in the asexual community people will, will start talking about libido and they’ll say like, well, libido and attraction are two different things. Some aces have libido, some aces don’t. Some aces have high libido, some aces have low. And so that becomes the conversation point of like, don’t mistake libido for attraction. Don’t mistake libido for sexual desire.

Courtney: In the right context, in the right conversation, these are true statements. But if we dig deeper into the actual societal stigma as it pertains to asexuality, it’s all founded on the premise that there is a right way to want sex, there is a right way to have sex, there is a right amount of sex to seek. or have or want. And while disproportionately that societal normativity will negatively impact asexual people, as we are- we tend to be further from that particular norm than the general population, it does harm everyone.

Courtney: It truly does. And yes, hormones, both in asexual and allosexual populations, can fluctuate and change a variety of things throughout one’s life. This is just how hormones impact a lot of people. But knowing that diagnoses like this and an urge to fix or solve a perceived problem coming from a lowered sexual desire or absent sexual desire as fundamentally a problem- if we look at it like that, we should be scrutinizing all of these definitions. Because if it is truly a natural hormonal cycle that for this period of your life, you don’t want as much sex as you used to, why are we saying that’s a problem and a diagnosis instead of saying, this is just how you are in this phase of your life. This is a normal, natural iteration of your life.

Royce: You raised a question about that in the last episode where one statistic was like “up to 50% of women.”

Courtney: Right! If it’s 50% of women, then maybe that’s not a medical issue. Maybe these are all natural deviations of what human sexuality can be. And when we talk about problematic power structures, I talked about you know, the medical institution being a power structure that can do harm. Psychiatry is a power structure that has done a lot of harm historically, is still doing harm to this day. The legal system as a power structure that does harm.

Courtney: All of these are because they are hierarchical in nature. And where there is a hierarchy, there is going to be harm done to often the most vulnerable populations. Now, I’m not advocating for a complete abolition of the field of psychiatry. I think there are people who can and do benefit from a variety of therapies, but I do cringe a little bit when people are far too quick to look at a manual like the ICD or the DSM or look at a medical professional or a psychiatrist, and without any context for how these fields were developed or how they have in the past or currently treat people, just say, well, it’s gotta be right.

Courtney: There’s gotta be science behind this. These are all experts. I know some people who have absolutely had their lives ruined because of either individual bad therapist or because they were subjected to a type of medical incarceration. And although generous readers of these diagnoses that we’re talking about today will say, well, these are just in cases of like, you know, a loving partnership or all consensual adults, we aren’t talking about any sort of sexual violence here.

Courtney: I want to look at it with a wider scope. I don’t want to look at it as individual situations because sex itself is and has been used as a tool of oppression.

Courtney: It has been used to enforce power structures. What’s the common mantra now about sexual assault? It’s not about sex, it’s about power. More and more people over the years have come to understand that for what it is. So yes, if we zoom out and look at it from a wider lens and say, here is an existing power structure that is trying to define what correct sexualities are, what correct sexual activities are, what correct quantities of sexual activities are, ask yourself, what existing power structures does that serve? And once you ask yourself that question, ask whether or not we should have these diagnoses on the books at all. So judging by the time now, I do unfortunately think we are going to have to break this out into two episodes because that was just the ICD-11, and the DSM-five has actually split hypoactive sexual desire dysfunction into uniquely gendered Diagnoses, which itself will warrant a lot of commentary from me.

Courtney: But the language in the DSM itself is uh quite lengthier. We also have the shortened desk reference to talk about. So I think that’s gonna be its own episode. We’ll just make this a little mini-series starting last week, because these are all very important points that we need to consider, and I want to make sure to do them all justice. So definitely tune in next week where we dig into the DSM-five.

Courtney: And for today, as always, I’m going to leave you off with our featured marketplace vendor, The Craft Xperimentalist. That’s experimentalist with an x, where you can find cross-stitch patterns to stitch on your own and finished buttons to wear with pride. If you are looking to get your own Finnish buttons, there are a lot of pride options.

Courtney: We have aromantic, transgender, rainbow, non-binary, pansexual, polysexual, intersex, genderqueer, the list goes on. I see demisexual, asexual. This is not even a full comprehensive list. You can find so many options here.

Courtney: Or if you yourself are a crafter, some of these patterns are just incredible. I think my current favorite- I, when I first found the shop, I really loved this ace space dragon. Of course, big purple dragon has like a spade at the end of its tail.

Courtney: Absolutely awesome. But more recently, I’ve been incredibly enamored with the Equality pattern. Share a cup of Equala Tea, and there is a big rainbow teapot right in the middle, and bordering this are teacups that all represent different pride flags. So we have like an asexual teacup, we have a genderqueer teacup, we have a lesbian teacup. It is so cute and wonderful. I know eight people off the top of my head who would be chomping at the bit to stitch this pattern.

Courtney: And even though Ace Week is over, I fully uh support your right to eat cake year-round. Uh there is a cake recipe on here where you can actually bake a cake, or if you would rather stitch a cake, there is a pattern for a beautiful rainbow multi-tiered cake on here.

Courtney: Absolutely wonderful. Delightful, even. If you are a crafty person and looking for something that isn’t necessarily particular to queer identity, there are a lot of other options as well. A beautiful uh tribute to Betty White here that says, “I just like animals better than people.”

Courtney: We’ve got a little like horror-themed pattern with succulents and like pots with skulls on it, spider webs, lots of little Halloweeny things, which even though Halloween is over, I know a lot of you out there celebrate Halloween year-round. But if you are a very particular seasons have their place kind of person, Christmas is coming up and there are some holiday patterns uh for that as well. The list goes on, so I’m just gonna go ahead and drop a link in all the usual places. the show notes on our website or the description box if you’re listening on YouTube, and you can check out The Craft Xperimentalist yourself and either order something pre-made to wear or order yourself a pattern to stitch yourself.

Courtney: As always, thank you all so much for being here, and we will talk to you all next time.