When a Person Feels Trapped in the Wrong Body: Gender Dysphoria
I am not certain why, but over the past year or so there has been extraordinary media interest in transgender issues. It seems that hardly a day goes by without another NYT article on some issue related to transgender people and their various triumphs and disasters. Of course, some of the recent heightened awareness about transgender people can be related to the Caitlyn/Bruce Jenner story or to Laverne Cox, the transgender woman who plays a transgender woman in the popular Netflix series, “Orange is the new Black.” To my great surprise, quite a few friends and professional colleagues have asked me whether I think we are experiencing an “epidemic” of transgender people, and if so, what might be causing it. So, I think it is time that I offer a few thoughts on the subject from my perspective as a pediatric endocrinologist.
Terminology
For me, one of the most difficult aspects of trying to discuss transgender issues, is the terminology. From a strictly medical diagnostic perspective, the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DMS-5) and the International Classification of Diseases 10 (ICD-10 have very specific diagnostic guidelines for both “transsexualism” and “gender dysphoria.” For the DMS-5, which is widely used by psychiatrists and psychologists, gender dysphoria includes long-standing discomfort with assigned gender. The “discomfort” refers to the person’s perception that their gender assignment interferes with various aspects of their lives, such as social interaction, work, school, etc. The current ICD-10 criteria are more detailed and use the terms “transexualism” and “gender identity disorder” (GID) to describe the condition: the desire to live and be accepted as a member of the opposite sex, to the extent that they are willing to undergo surgery and hormone therapy to accomplish their goals; the absence of another mental disorder or a genetic, intersex, or chromosomal abnormality; and evidence that their desire to lives their lives as members of the opposite sex situation has been long-standing (at least two years). Thus, from a strictly medical perspective, at least based on the definitions, people with gender dysphoria are considered to have a disorder, if not a specific disease. Needless to say, this view of transgender people and gender dysphoria, does not sit well with some people, and has led to complicated, and often, acrimonious debates. Let me just list some of the many terms that get thrown about in discussions about the subject: transsexual/transsexualismism; gender identity; gender expression; gender dysphoria/gender incongruence; genderqueer/cis gender vs. transgender; sex change medications and surgery vs. gender-affirming interventions; lesbian, gay, bisexual, and transgender (LGBT) community; transitioning; same-gender living (SGL). I could go on and on with terminology, but I do not think it would serve any useful purpose. Just remember that some transgender people have very strong feelings about what they are called and what non-transgender people might think and or say about them.
Why are pediatric endocrinologists involved in these issues?
You might wonder why pediatric endocrinologists often get involved in the care of transgender people. The reason is that we deal with many different medical conditions that involve sexual development (e.g., ambiguous genitalia in newborns, sex chromosome abnormalities, early puberty, late puberty, abnormal pubertal sexual development), and that includes children and adolescents with gender identity issues. It is very important to identify at as early an age as possible, children who might have have such “problems,” so that a determination of their gender status can be made prior to onset of puberty. For example, you can imagine how much more complicated it can be for a patient who has determined to change their gender identity from male to female, but only after they have gone through puberty and have many non-reversible physical changes. The idea is to identify these patients before puberty and develop a “transitioning” plan, that includes a temporary delay of any pubertal sexual development changes, while patients are undergoing extensive medical and psychological evaluations to determine if they do have gender dysphoria, and if necessary, to help them with the transitioning process. Of course, this process usually includes intensive counseling. It is very important that health professionals who provide primary care, and others who have close contact with children, such as school teachers, be both educated about the transgender phenomenon, and the importance of early identification of children who may have gender identity issues.
Demographics and etiology
It is important to understand that despite the recent “press,” the prevalence of people who identify as transgender or transsexual is quite low. Based on world-wide surveys, the true prevalence, ranges from about 1 in 20,000 to about 1 in 50,000 adults. I suspect that the true prevalence is somewhat greater. There is no evidence that the prevalence of the condition is increasing. With respect to cause, as best I can tell, no one has a clue what causes people born as one sex, to realize that that they are not what their name, birth certificate, wardrobe, chromosomes, and genital appearance suggest. We owe much to the Dutch for our current understanding of the phenomenon. They have been true pioneers in the field, and the rest of the world is trying to catch up. I think I am correct in saying that there is consensus among the experts that the phenomenon cannot be explained by known chromosomal abnormalities/variants, by hormonal effects in utero or after birth, or by psychological factors. What I usually tell people who are struggling to understand the phenomenon is the following: “it is what it is.” Needless to say, it can’t be “cured.” In children, the signs gender dissonance are typically present by age 3-4 years, and firmly established by age 8-10 years. Studies show it is rare for a people with gender dysphoria that persists throughout childhood, to “change their minds,” as adults. Not surprisingly, these children are often teased, bullied, and assaulted. Schools are rarely supportive. It should not come as a great surprise that the suicide rate among these individuals is shockingly high.
Want to learn more?
If you want to learn much more about this subject, I strongly recommend that you consider reading a recently published book, entitled: “Becoming Nicole,” written by Amy Ellis Nutt, a Pultzer Prize winner (Random House). This excellent nonfiction book details the trials and tribulations of the Maines family, and their identical twins, Wyatt and Jonas. I don’t want to give away the story, but Wyatt ends up transitioning into Nicole, a transgender female.
Summary
So, just in case you want me to summarize the discussion, perhaps I can best do it by reminding you about the famous 19th century English poem/nursery rhyme: “What are little boys made of?”
what are little boys made of?
what are little boys made of?
snips* and snails
and puppy dogs’ tails
that’s what little boys are made of
what are little girls made of?
what are little girls made of?
sugar and spice and everything nice
that’s what little girls are made of
*snips are small eels
It should all be so simple.