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Developing Differently

Even though an estimated 1.7 percent of babies are born intersex, there’s still a general misunderstanding as to what it actually means

Cindy Stone was tired of hearing about mammograms, Pap smears, and other “required” yearly doctor checkups.

At 35 years old, the Indiana University professor didn’t think she had much to worry about. Her body felt fine, and she was infertile, anyways, so gynecologist visits seemed silly to her. And when she was 17, right before heading to IU for college, she was told by her doctor that she had no need for other doctors or checkups. In fact, they insisted she not see another doctor after they told her about her infertility.

She had gone to that gynecologist because, although she was 17, years past the typical starting point for menstruation, Cindy never had a period. Back when she was 13, the doctors had given her “vitamins” meant to jumpstart her cycle—a monthly supply of different colored pills, 21 of one color and seven of another—

but it had yet to appear. After exploratory surgery and several tests, Cindy and her mother returned to the office for the results. Cindy was called in first, and the male doctor told her one thing: You’re infertile.

You’re a normal girl in every way, but your ovaries just don’t work, so that’s why you haven’t had a period. And you never will.

Cindy was shocked, but it seemed to make sense to her. She didn’t think anything of it when the doctor told her to never see another doctor about the issue. She was infertile, and that was that. He even told her that, because of her diagnosis, she could go ahead and have sex with any boy she wanted, risk-free. She was going to college, after all, and it was the ‘70s.

But Cindy thought about that doctor’s “advice” for years. Why shouldn’t she get a second opinion? Why would he tell her to not see anyone else? She had more questions than answers, and so at the age of 35, she decided to see a new gynecologist. The recent death of her father made her want to pay closer attention to her own health. She wanted answers.

After the initial tests, Cindy heard back from her doctor; he had reserved two hours for her to come and talk about the results. Two hours. During that time, he explained the real reason Cindy had never had a period. Yes, she was infertile. But it wasn’t because her ovaries didn’t work. It was because she didn’t have any to begin with.

Her chromosomes weren’t XX, like a typical female. They were XY.

And the most shocking: She had undescended testicles in her abdomen. She was genetically male, but somewhere along the way in her fetal development, something changed. Her body couldn’t react to the male hormones, leaving her to finish developing as female.

You have complete androgen insensitivity syndrome. You’re intersex.

Out of every child born, it’s estimated that 1.7 percent of them are born intersex, according to the Office of the United Nations High Commissioner for Human Rights. By some estimates, that’s about one in every 2,000 babies. This means that the individual’s sex characteristics are atypical in some way compared to the sex they’re “supposed” to be. Intersex conditions can range from being born with a combination of both male-and female-typical sex characteristics to something less obvious, like being genetically male, but physically female, like Cindy. For that reason, some medical professionals prefer to call them disorders of sexual development in an attempt be more general and inclusive.

Cindy Stone found out she was intersex at 35 after being lied to by her doctors.

For those who are intersex, sex and gender aren’t just a question of one or the other—it’s a little more complicated than that. Though the existence of intersex people proves that someone’s biological sex can fall somewhere in between male and female, human brains work in a way that can make this hard to accept. Kerri Pickel, who studies cognition as a professor of psychological science at Ball State University, says that we naturally put things into categories—it’s just how the brain works.

When a person doesn’t seem to fit into one category or the other, we might feel confused or uncomfortable. One of the first and most prominent categories we place someone in upon first meeting them is based on sex or gender—two features most people don’t differentiate between. If someone seems ambiguous, our brains don’t know what to do with them, creating what Pickel calls an “unclear case.” This cognitive distress causes discomfort because it messes with the brain’s organized way of understanding the world. That’s just one reason some people are so against accepting things like the existence of intersex individuals, Pickel says. We need to put everyone into a box, but sometimes they just don’t fit.

According to the American Psychological Association Task Force on Gender Identity, Gender Variance, and Intersex Conditions, children born with ambiguous genitals usually go through a number of tests before receiving sex assignments. These tests are meant to determine which particular intersex condition a child has. This often helps in assigning a sex and in deciding whether surgery is medically necessary. But even if surgery isn’t needed, it’s sometimes done at the request of the parents or suggestion of the doctor out of a desire to “normalize” the genitals toward one of the binary sexes.

Intersex support and advocacy groups often fight against these kinds of cosmetic surgeries unless it’s medically necessary. If a baby can’t pee, then something needs to be done. But Jeanne Nollman, former president of the AIS-DSD Support Group and an active intersex advocate and educator, says in most cases, when surgery isn’t necessary, it should not be done until individuals can decide for themselves. And Cindy agrees. These surgeries can cause irreparable damage, like a decreased sexual sensitivity, that can affect them for the rest of their lives—one of the main reasons Cindy fights against them. Doctors shouldn’t be able to make decisions for their patients, which is something Cindy has dealt with all of her life.

After Cindy found out she was intersex, she felt betrayed by the doctor she’d seen at 17. She couldn’t believe something that serious had been hidden from her. She wasn’t just upset—she was pissed.

She also wasn’t sure who she was anymore. She identified as a lesbian, but did that category really fit if she was genetically supposed to be a man? She didn’t feel like a man, and she definitely didn’t want to be one. So, she was confused by all of this.

Cindy’s therapist helped her come to terms with all of this. She began seeing one a few years prior to her diagnosis to help her deal with what was happening in her life. Her partner of 20 years, Donna, had terminal cancer, and several other relatives, including her father, had recently died as well, so she was dealing with a lot. On top of all of that, she needed to talk to someone about who she was and what she should do, which wasn’t something her medical doctors could help her with.

The therapist helped Cindy begin to work through these things, but it wasn’t until she discovered support groups that she truly felt less alone. As the internet grew in popularity during the early 2000s, Cindy found people like her through online searches. She’d been told her condition was rare and that she might never meet other people with disorders of sexual development. But now she knew they were out there.

Joining a support group can be life-changing and empowering for intersex individuals, Nollman says. Without knowing how many people are like them, it can be hard for intersex people to really understand and accept who they are—especially when doctors tell them they’re “rare.”

Cindy became active in the intersex community in the years following her diagnosis. Like Nollman, she wants people to just have a better understanding of what it means to be intersex, as well as to stop infant and child cosmetic surgery. She says her generation really tried to pave the way for the ones to come by spreading awareness and increasing the resources available to intersex individuals. Unlike the newer generations, she and others her age didn’t really have anything to help them out. Now there’s at least Google, which has helped a lot.

Georgia Andrews, a 24-year-old intersex woman living in New Zealand, found the internet to be particularly helpful in her journey to accepting who she was. Though she didn’t use it to diagnose herself, she did try to find more information about Swyer Syndrome, her intersex variation, as well as to connect with other intersex individuals. She found a topic forum where others had posted about being intersex, and joined the discussion. That forum was soon moved to a group on Facebook, where she became even closer to some of the members, eventually meeting them at one of the annual AIS-DSD conferences.

Georgia has heard the stories of people from a variety of locations and age groups, and in many ways, she says they’re all the same: Until finding support groups, many people had felt isolated and lied to. The only difference she’s seen between generations is the ability people now have to find their own answers and connect with others. But regarding how the medical system treats intersex people, she doesn’t think much has changed. And according to recent reports, she’s not wrong.

The Human Rights Watch, in partnership with the intersex advocacy group InterACT, detailed several of the issues intersex individuals have faced in the medical system, both now and in the past, in their recent report. Through the personal testimonies collected, researchers found that most intersex people usually avoid going to doctors’ offices or getting checkups because, in the past, they’d been lied to and had decisions made for them. That loss of agency traumatized them to the point of avoiding the medical care they might need later in life. This is why Nollman believes it’s important for doctors to realize the lasting impact their care and decisions can have on intersex people.

When Cindy was 40, a few years after finding out the truth, she contacted the doctor’s office where she’d been lied to and told she was just infertile. Like many others searching for the truth, she was told her records had been “burned in a fire” and were gone. But she kept digging.

About four or five months later, after a lot of persistence and pushing those offices, Cindy received her medical records. They had been archived and sent to another doctor after hers had retired—not burned. And the words she read in the records only made things worse. Right there, on the papers that supposedly didn’t exist anymore, she remembers reading: Must not tell patient she has XY chromosomes. Must not tell her she has undescended testicles in her body. Must not tell her parents either.

Some things have changed since Cindy was 17. Most of the time now, parents are at least told about the intersex conditions. But doctors usually still urge them to not tell the child.

Nollman says it’s not always on purpose, or malicious—medical professionals just might not understand the implications of their actions. This is one of the main reasons she tries to educate as many people as possible—doctors, lawyers, therapists, and more—so there’s less confusion about what’s actually happening in terms of intersex conditions. Both doctors and parents should know and understand how certain surgeries might affect children, Nollman says.

Even if a surgery isn’t necessarily cosmetic, like when undescended testes are removed in a gonadectomy, it can still have lasting effects on a person’s body. In a person with AIS, like Cindy, removing the testes before puberty could lead to decreased bone density and halt normal development. Though Cindy didn’t have a gonadectomy until after her testes had laid all of that groundwork in her body, she still regrets the decision.

She was sent to several specialists after learning she was intersex, who all told her the same thing: She needed a surgery to remove her testes, or she might get cancer. Because they were inside her, she was told there wouldn’t be an easy way to monitor changes. And if they became cancerous, those cells could easily spread to other parts of the body before being noticed. It would be safer to remove them, they told her.

But without testes, her body would no longer produce any sex hormones. She’d need to take them artificially, with hormone replacement therapy. Cindy gets hers through an estrogen patch, which she will continue using the rest of her life. But these can have side effects. She ended up losing a lot of her “get-up-and-go,” her sex drive decreased, and she developed a little bit of arthritis in her hands, possibly because the artificial hormones weren’t doing as well for her body as the ones produced by her testes. Even as an adult who made her own decision with the surgery, she still has those regrets.

Cindy wishes she would have known about her condition sooner. But even with all of the lies and how much she went through in the process of discovering the truth, she doesn’t think she’s “special” or that she’s had it worse than other people. As she puts it, “everyone is going through something.”

And at 61 years old, Cindy doesn’t think much about being intersex anymore. Occasionally she’ll talk to parents of young intersex individuals, helping them understand more about it, but it doesn’t affect her much beyond that.

She took an early retirement from her teaching position at IU, and she doesn’t travel as much as she used to for conferences or anything else. She says she’s leaving it up to the younger generation to continue what she and the others started. While they’re continuing the fight, she can relax with her iPad in her Bloomington home and spend time with her wife.

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