What is intersex? What do you know about your patient’s sexual development?

I don’t know about you, but I learned very little about variations in sexual development during my medical education over a decade ago. Commonly presented topics were usually of a genetic nature—this person has XXY or XO chromosomes and the “abnormalities” such chromosomal variations can bring. That’s about the extent of my education regarding sex development and gender, with the impression conveyed that these were minor topics.

Fast forward to now, when I have since learned that there are people who defy our traditional understanding of male and female sex. These people are called intersex, and they account for 1.7 percent of our population. Do you know the struggles of someone who is intersex like you know the struggles of someone who has diabetes? I ask this mainly to point out that we need to know our patients. Not many doctors know about people with both ovarian and testicular tissue in their bodies (Ovotestis) or those born without ovaries or testes (Swyer syndrome). Is a patient with AIS and XY chromosomes but stereotypical female external anatomy considered male or female? Their AIS status is important so that you can perform appropriate cancer screening. If this patient presents to your office with a female partner, does that mean they are gay? Yes, according to external appearance, but not according to their genetics. Mind-blowingly complex, right? If there is such a vast knowledge deficiency within the medical community about sexual development, what is to be expected of the lay community?

Let’s go back in time for a bit to when I was in medical school and had to care for a transgender patient. The patient was labeled as difficult, nasty, or angry. The patient preferred me as their health professional (and would talk to no one else) because I showed them that I wanted to understand their concerns and help address their health issues. I didn’t understand why I was the preferred care provider until much more recently. I realize now that I treated them with common decency, compassion, and genuine care. I had no assumptions, or, if I did, I tried not to let them color my actions because I understood that the person before me was a challenge to my knowledge and understanding, and I hoped to learn. Transgender patients as medical students appear to be labeled as “psych” patients. While transgender patients or intersex patients may have psychological symptoms or diagnoses, their psychological symptoms are more typically a result of their mistreatment in medicine than a result of their gender identity.

Older doctors may lose their student mentality and become more judgmental, political, or unsympathetic in their care. However, we must fight to provide quality, judgment-free care to all our patients, cis- and transgender alike.

Acknowledge the intersex person’s gender experience, not what you think it should be. You should always ask an intersex patient what their preferred pronoun is. Some may say “She,” some “he,” some “they,” some “none”—as in use their name, no pronouns. Using unfamiliar pronouns can feel uncomfortable at first. But again, this is not about patients making you feel comfortable as you care for them. It’s about you making them comfortable, so that you can provide appropriate care.

There is a lot to learn and a lot of literature out there. I am still learning myself. My goal is to educate physicians about our diverse patient populations. Intersex patients are more at risk of premature death, more at risk of ill health (whether medical or mental). Why is this? And sadly, the medical community is contributing to this trend. Social factors, including our own biases, can hinder our ability to provide effective care and may pose a risk to patients. We can reduce the risk of harm that we may cause our patients by learning more about who they are and what their lives are like.

The decision to be a physician is a commitment to lifelong learning, and there always seems to be so much more that we should know. Gender and sex development and their clinical presentations need to be added to our need-to-know list. It is not a topic to be delegated to only endocrinologists, surgeons, or sex development professionals.

A national study of the health of intersex adults found that depression, anxiety, and suicide rates are high among intersex individuals. In fact, almost one-third of participants had attempted suicide. Patients are literally wanting to die because of the dysphoria they experience in how they see themselves and how the world sees them. These researchers found that among other factors, “low satisfaction with health care [was] associated with clinically significant symptoms of depression and anxiety.” We can do something about this trend and make a profound impact on the lives of intersex people. Furthermore, the skills we learn with delivering proper care to intersex patients will help us in delivering proper care to all our other patients.

There are many resources for getting educated about intersex. Join the new Facebook group I founded, Physicians for Intersex Advocacy (PIA), if you’re interested in learning more or in helping with sexual development and intersex education and advocacy.

As physicians, we are more than healers. We are also educators and advocates. Let us wear our roles well.

Rosemary Eseh-Logue is an internal medicine physician.

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