Different, not broken: Asexual people still reckon with erasure from their doctors

When Sophie was hospitalized for kidney problems in January, her doctor insisted on ordering a pregnancy test. This is standard practice for many patients presenting to the emergency room, but Sophie knew it was unnecessary for her. At 24, she had never had sex and wasn’t planning to. 

As someone who identifies with the asexual community, she is averse to sex. Yet her doctor wasn’t familiar with asexuality and didn’t believe her until a case manager was assigned to handle the dispute, she said.  

“I understand that for a CT scan, you can never be too sure, but the way it was approached was absolutely not okay,” Sophie, who is using a pseudonym to protect her privacy, told Salon in a phone interview. “He absolutely would not believe me, and the way he worded it was like, ‘Well, everyone lies about that.’”

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Ultimately Sophie, a musician pursuing her master's degree in criminology, was given nephrostomy tubes to treat her kidney problems and discharged. But the experience stuck with her. The doctor’s office is a vulnerable space, and to be disbelieved after disclosing her sexuality there left her feeling like her identity was invalid. 

Sophie’s umbilical cord never closed when she was born and scar tissue build-ups have left her with urinary problems that worsened over the past decade. As someone who has been in and out of doctors' offices throughout her life, her experience in January wasn’t the only time her asexuality has been dismissed or misunderstood. During another kidney treatment, doctors were concerned she was hemorrhaging but waited three hours to get a CT scan because they were waiting for pregnancy test results.

“It just makes me feel really invalidated and helpless,” Sophie said. “It feels like if I make one wrong move, they’re going to discharge me because of my sexuality.”

"It’s important to study asexuality because it allows us to understand sexuality better."

People who are asexual experience little or no sexual attraction to others. The ace spectrum includes asexuals, who experience no sexual attraction to others; demisexuals, who experience sexual attraction but only after forming a close bond; graysexuals, who may experience infrequent sexual attraction; and other identities. Asexuality is distinct from aromanticism, in which people experience little or no romantic desire, although there is some overlap between these communities, says KJ Cerankowski, an American and gender sexual studies at Oberlin College who studies asexuality.

“There are different ways people experience their asexuality,” Cerankowski told Salon in a phone interview. “Some experience it as something that feels innate and something that might be lifelong, whereas some people experience it in a temporary period of their life.”

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Anecdotally, people in the asexual community report their identities are pathologized by medical professionals, who order unnecessary tests or fail to perform necessary screenings because patients report feeling little or no sexual desire. When people on the ace spectrum turn to their doctors for help understanding their identities, they can be met with stigma and stereotypes. Some are misdiagnosed with conditions like depression and their asexuality is seen as a symptom that needs to be fixed. Flibanserin, a drug prescribed to increase sex drive, has been described by bioethicists as the "asexual equivalent of conversion therapy."

One percent of the population was thought to identify as asexual based on a 2004 survey by Anthony Bogaert, a professor at Brock University who authored one of the first books on the subject, "Understanding Asexuality." However, that data didn’t include other people in the ace community who identify as demisexual or graysexual, and other data sets have suggested that the number could be higher. It’s also a number that would be expected to change, as sexuality is wont to do in general, and as awareness increases and people find communities that help them understand their identities. 

“It’s important to study asexuality because it allows us to understand sexuality better,” Bogaert told Salon in a phone interview. “It allows us to understand the whole spectrum of sexuality, and that includes asexual people.”

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For decades, a lack of sexual desire was explicitly considered a disorder in the American Psychiatric Association’s (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM). It wasn’t until 2013 that through advocacy from the Asexuality Visibility Education Network (AVEN), the APA added a clause that stated people with a lifelong absence of sexual desire who identified as asexual should not be classified as having a disorder.

Still, many criticize the new DSM because it requires people to know about asexuality and identify with it in order not to be pathologized. In reality, asexuality is still largely invisible in many settings, says David Jay, AVEN’s founder. In the ace community census the organization regularly conducts, people report that providers often hyperfocus on their asexuality and see it as an issue to be cured, Jay said.

“The current criteria is insufficient in protecting us,” Jay told Salon in a phone interview. “What we’re seeing anecdotally and through the ace community census is that very often, mental health practitioners just don’t have a concept of what a fulfilled life could look like without a sexual relation at the center of it.”

Demographic surveys and research often exclude asexuality in drop-down menus of identities to choose from, and there is a paucity of asexuality research as a result, said Lauren Beach, an assistant professor at the Feinberg School of Medicine. That’s a problem because if those with the power to make change don’t know these people exist, they can’t know what unique health needs they may have and how to help them, Beach said.

“There’s just really nowhere for asexual people to be seen,” Beach told Salon in a phone interview. “We do have a signal that there are health disparities in this population, and it is important that ace people are counted.”

As it stands, many people in the ace community are navigating a world that has sexuality embedded in most of its systems and was not designed for them, said Megan Carroll, a sociologist at California State University, San Bernardino. This exclusion extends beyond the doctor’s office: Assumptions that all people experience sexual attraction and romantic desires, also known as allonormativity, are embedded in housing, taxing and marital systems. More than half of states still have marriage consummation laws that require sex to in some way prove the authenticity of a partnership.

“For most asexual people, if they’re not aware of what asexuality is, they reach the conclusion that something must be wrong with them, and that is because we live in a society that tells you something must be wrong with you if you’re not interested in sex,” Carroll told Salon in a phone interview. “Compulsory sexuality is this phenomenon that you are compulsorily required to be a sexual person, and that is threaded through all of these major institutions like medicine.”

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Jay, of AVEN, is a co-parent in a three-parent family in California. When his son was born, the hospital didn’t allow both he and his co-dad to be in the delivery room at the same time, he said.

“We had to trade off because they were institutionally structured to only allow one partner,” Jay said. “So my co-dad wound up not being there when our son was born.”

"There’s just really nowhere for asexual people to be seen."

In one 2020 study published in the Archives of Sexual Behavior, more than one-third of participants said their doctors misdiagnosed them with a medical condition instead of recognizing their asexuality. The majority reported feeling uncomfortable discussing issues related to sexuality in the doctor’s office. Katherine Linder, a doctoral student at the University of Iowa whose thesis examines the medicalization of asexuality, said many people in the ace community also report not getting routine screenings or going to OBGYN appointments because they are not sexually active, even though some screenings are recommended regardless.

“Some doctors have misconceptions that all asexual people don't have sex, and there's a lot of treating the asexual community like a homogenous group,” Linder told Salon in a phone interview. “It’s very much a spectrum and there are so many identities that exist on it that healthcare professionals and people in general should be aware of.”

Yet multiple studies show there is little consensus on how medical school curriculums should incorporate sexuality, with most focusing on its pathological aspects. According to one survey published in the Journal of Sexual Medicine, just one-third of medical students who responded felt comfortable addressing patients' concerns related to sexuality. The issue extends beyond medical school: Just 29 states require sex education programs in schools, with most approaches excluding queer communities. According to a 2021 study published in the American Journal of Sex Education, only 17 states require sex education to cover sexual orientation.

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Seer, a family medicine physician based in Oakland, California, who uses a single name only, co-taught an optional course in medical school at Mount Sinai on sex and medicine that helped students learn more about the gender and sexuality spectrums and how to be more inclusive of diverse queer identities and experiences, including sex work and kink. Seer hopes courses like these become more integrated into mainstream curricula, rather than extracurricular.

“For many folks, this is an important part of their identity that is already marginalized and unsupported, and that can be reinforced by pressures from the medical institution to pathologize it,” Seer told Salon in a phone interview. “To have a provider who sees it from more of a liberated and supportive perspective can be really healing and normalizing, and it stops [providers from] othering or marginalizing folks for being who they are.”

A lot of queer culture is itself very sexually saturated, explained Liza Blake, an associate professor of medieval and Renaissance literature at the University of Toronto who co-created the Asexuality and Aromanticism Bibliography. While many in the ace community are sex-positive without necessarily wanting to have sex themselves, sometimes queerness gets reduced to an eroticism that leaves out ace identities, she said. As a result, people who identify as ace are not always welcomed in straight communities or queer communities.

“I was in Berlin this Christmas and went to a queer market, where there were just penises and vaginas everywhere,” Blake told Salon in a phone interview. “The idea that queer equals erotic rather than all the sorts of identities that fall under the queer umbrella [is false].”

The marginalization currently faced by many in the ace community has serious consequences, including forcing many in the community into violent situations. In the 2021 Asexual Lived Experiences Survey, 39% of respondents who reported ever being in a relationship experienced intimate partner violence, or forced and nonconsensual sexual situations. 

“Representation allows asexual people to know that asexuality is just part of the normal spectrum of human sexuality and that they are not broken and nothing is wrong with them,” Carroll said. “Without that knowledge, we have plenty of evidence that asexual people under systems of compulsory sexuality can find themselves in violent situations.”

"There is this burden of guilt in some contexts for marginalized people ... That’s a piece of the puzzle that doesn’t often get talked about."

The intersections of race and disability with asexuality present their unique challenges. People with disabilities who are asexual have to navigate a system that very recently could have institutionalized them for telling their doctors they didn’t feel sexual attraction for others, for example. Indigenous, Black and Latinx people who identify as asexual may have to combat other stereotypes and hypersexualization to express themselves, said Brittney Miles, a sociologist studying race and sexuality at the University of Illinois Urbana-Champaign.

“As a Black person whose ancestors survived the transatlantic slave trade, it is seen as your responsibility to procreate and exist in this world that has tried to eradicate you,” Miles told Salon in a phone interview. “The reality is, there is this burden of guilt in some contexts for marginalized people, racially marginalized people and people who are asexual. That’s a piece of the puzzle that doesn’t often get talked about.”

Ultimately, the erasure of asexual identities stems from the same powers that have oppressed women, people of color and queer communities for centuries, said Jessica Hille, a gender and sexuality researcher at Indiana University's Kinsey Institute. 

“There are appropriate ways of being in service to a particular vision of society, which has historically in our Western European colonial history been heterosexual, monogamous, marital and reproductive,” Hille told Salon in a phone interview. “Anything that deviates from that is seen as a threat to the status quo, which is a threat to people in power and has to be regulated.”

Cerankowski, at Oberlin, traced the roots of many of society’s sex-imbedded systems to colonialism and an agrarian society that prioritized childbearing to have extra farmhands. It was also strongly tied to generational wealth and having heirs to pass down one’s fortune to.

“The very idea of the American dream and American citizenship is to be a product — not just a productive citizen, but a reproductive citizen,” Cerankowski said. “The very ideology that America is founded on is sort of anti-asexual in that way.”

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There’s evidence to suggest there were broader understandings about gender and sexuality among cultures pre-colonization, Hille said. Still, history is rife with attempts to erase queer expressions of love and relationships, including asexual identities. 

Yet that hasn’t stopped the ace community from ensuring their voices are heard. Jay, of AVEN, emphasized the importance of updating sexual education materials to be more inclusive to the ace community and recently passed a non-discrimination ordinance in Massachusetts to protect alternate family structures that exist outside of the nuclear family. 

Beach is the prime investigator for Project Recognize, which aims to improve data collection for asexual and sexual minority identities. Research is also starting to catch up with ace advocacy, with a review of 44 papers describing best practices for healthcare providers who have patients in the ace community published last year. 

There is still a ways to go before equity is reached. Yet increasing visibility for sexual minorities makes space for the infinite forms that love and relationships for everyone can take. Ultimately, making systems in and outside of medicine more inclusive expands them for people both in and outside of queer communities. 

“If you start to see the world in a different way, where there are these different options of how you can be and exist, then I think that it frees up a lot more room for even sexual people to define their relationships and their sex lives and even their own identities,” Beach said. “We are giving language to these experiences.”