In the intersex community, we’re desperate for quality care. Doctors aren’t listening

I sometimes had a tough time with doctors before I found out — at the age of 41 — that I was intersex and that my true medical history had been hidden from me for decades. Now that it’s out in the open, I still can’t find knowledgeable doctors to help me.

When I was a teenager, a doctor told my parents that I needed surgery to remove my “uterus” and “ovaries” because something was wrong and they might become cancerous. It wasn’t until 25 years later that I got my medical records and I found out that I have androgen insensitivity syndrome, a condition in which a person with X and Y chromosomes is born with a typically female appearance.

I was a perfectly healthy teen, and that unnecessary surgery actually removed my hormone-producing testes. As a result, I’ve needed hormone replacement therapy ever since. But even though I live in a major city renowned for its hospitals, I still haven’t been able to find a qualified endocrinologist to manage my treatment — let alone a physician who understands what it means to be intersex. That’s because medical care for intersex people is overwhelmingly focused on surgical intervention when we’re children and too young to consent. The needs of intersex adults are an afterthought.

I’m not alone. Hundreds of intersex people have shared similar stories with me in person, at conferences, or on social media. As a friend recently lamented on Facebook, “I read a ton of medical journals and peer-reviewed papers. It’s the only way for the intersex community to be informed, so we in turn can inform our doctors and nurses.”

Too often, our best bet is to find health care providers who are at least willing to listen to us, and then do the exhausting and often emotionally draining work of educating them about intersex. Outside of the specialist fields of pediatric endocrinology and urology, most medical professionals have little or no intersex-specific training. And this gap has only worsened as the medical community and the intersex rights movement have found themselves at loggerheads over whether intersex youth should have authority over their own bodies.

Half a century ago, medicine became focused on “fixing” the bodies of intersex infants and children, often via drastic surgical interventions like clitoral reductions and vaginoplasties, in order to make their bodies conform to typical notions of male or female. These surgeries aren’t medically necessary and can cause lifelong harm to people who grow up and wish their bodies had been left intact until they could decide for themselves what they wanted.

That’s why intersex rights advocates like myself are fighting to stop unnecessary and irreversible surgeries on healthy intersex kids too young to consent to them. The United Nations, the World Health Organization, Amnesty International, and Human Rights Watch agree with us.

But just because we want doctors to delay unnecessary surgery on children doesn’t mean we don’t want more specialized intersex care. On the contrary, we’re desperate for it.

It’s sadly common for intersex adults to avoid health care providers because of the difficult experiences we’ve had as children. That puts us at risk of poor health outcomes. It would make a huge difference if more providers were aware of the medical, social, and emotional needs of intersex individuals. For example, many people, including physicians, assume that being intersex is the same as being transgender, or that all intersex people identify as LGBTQI. Some do, but many others don’t. Similarly, many of us find the still-common medical label “disorders of sex development” stigmatizing.

Questions from physicians that display basic ignorance about intersex conditions can be frustrating or upsetting — like when I routinely get asked, “What is the date of your last period?” at the doctor’s office, even though a glance at my chart should make it clear I’ve never had one. Sensitive and informed care around fertility and family planning issues is also important, especially since many intersex people were left infertile by childhood surgeries and others may need assisted reproductive technology to have children.

Care providers should understand from the outset that for many intersex adults, simply visiting a doctor’s office can be a traumatic experience. Empathy and gentleness, especially around physical exams, can go a long way toward making us more comfortable when seeking health care.

What intersex people want from the medical community is for physicians to listen to us. We’ve been critical of medical practice, but we’re not the enemy, and we need your help to fix the legacy of marginalization that leaves many intersex adults with unmet health care needs.

Today is as good a day as any to get informed about intersex issues — and pass that information along to your colleagues.

I urge health care providers to reach out to intersex advocacy and support groups. We’re always looking for intersex-aware referrals. And I ask medical and public health educators to advocate for better inclusion in the curriculum — intersex deserves more than just a paragraph or two in a textbook. Even better, bring intersex people to your medical or public health schools so students can learn from us firsthand.

Above all, acknowledge the trust gap and the reasons it exists — that’s the first step toward making sure we’re not afraid to seek the care we need and deserve.

Kimberly Zieselman is the executive director of interACT: Advocates for Intersex Youth.