Gender Identity and Chronic Illness

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When I came out as genderfluid in late 2016, my friends were supportive. Now that it’s been a year, though, I’ve encountered discrimination, misunderstanding, and an internal struggle. The biggest issue I struggle with is this question over whether or not I would — or even could — transition while being chronically ill.

Definitions

Before I go much further, let’s get some definitions down.

Sex is based on your genitalia. If you own a penis, you’re called male. If you have a vagina, you’re called female. There are intersex people as well as others who don’t necessarily fall into these categories.

Gender is rooted in your brain. You may feel that your gender and sex are the same. However, plenty of people feel these two things are different for them.

Cis or Cisgender simply means that you identify as the gender you were assigned at birth. In most cases, a physician looked at your genitals upon being born and assigned your sex. It was then likely assumed by your family that your sex and gender matched, and that you were either male or female. If you’re cis, then you still feel that your sex and gender match.

Trans or transgender people are the opposite of cisgender people. There are many genders and being trans doesn’t necessarily mean someone is going to transition (undergo gender affirming surgery or hormone treatment). Really, trans is an umbrella term that covers a variety of different identities. It may mean someone uses different pronouns, expresses their gender in different ways, or isn’t out about their gender identity.

My history

I fell ill with juvenile rheumatoid arthritis when I was 5, and the diagnoses keep coming over 20 years later. Everything I went through has been colored by my illnesses. Growing up, I could usually be found in sporty tees, jeans, and wearing a backwards baseball cap. I was a tomboy, through and through, despite being unable to take part in some of the stereotypical tomboy activities. My illnesses prevented me from being an athlete, but I was a gamer and a skater. Everyone would always comment about how I cleaned up well when I dressed feminine.

In high school, I would dress feminine a few days a week. The other days were full of gender-bending clothing. I’d look like a hippie one day and very butch the next. When I got to college, I really just dove into more masculine or neutral clothing. The only things I’d heard about transgender folks were disparaging jokes and a lot of misinformation … but, in exploring myself, I told my mother one day that I felt like a man trapped in a woman’s body a fair amount of the time.

“Never tell me that again,” she said.

That was my first introduction to the discrimination non cisgender people face. It was very difficult being unable to discover more about my gender. High rates of depression and anxiety hit the trans community incredibly hard due to discrimination and stigma we encounter. Even more than that, by the time I learned more about gender, I was on so many treatments and struggling with so many medical issues … How could I ever consider transition?

I’m not alone in my concerns. There are many others who struggle with difficulties around transitioning or utilizing gender-affirming technology. There’s very little research around health outcomes and transitioning, especially long-term effects of hormone replacement therapy. In reality, the experts on these things are other trans people.

One of the biggest issues surrounding trans healthcare is that research is both far behind reality and not focused on what best serves the community. Trans patient advocate Charlie Blotner recently gave a speech on trans healthcare at Stanford University’s Medicine X conference. They stated one of the most obvious concerns for trans patients: “I have research about what my nipples look like, but I don’t have research about what my liver is going to be like when I’m 80 because of these weekly shots of testosterone.” Charlie and their friend Micah work hard on educating providers, highlighting important research, and sharing patient voices through their series Transgender Health: Patients & Providers.

Gender-affirming surgery is already incredibly difficult to consider partaking in. Hormones can be tricky, especially with unresearched long-term effects. Contraindications between weekly hormone shots and many medications haven’t been studied. At the same time, not taking affirming steps can vastly impact quality of life.

Provider view

I spoke with Michael Salas, a sex therapist and LGBT+ advocate, about issues trans people face and what happens when it’s compounded by disability or chronic illness. “There is so much shame and fear for those who are not cisgender,” Salas said. “This comes from the general mistreatment that almost everyone faces when they aren't cisgender.”

As someone who hasn’t disclosed my gender identity to my healthcare team, I struggle with this decision. I know that coming out to them may help me get better care and avoid being misgendered. At the same time, I fear their reactions. Salas touched on this, too: “There is a fear [among clients] that I am going to be a biased gatekeeper, who will prevent them from taking steps toward hormone-replacement therapy and gender-affirming surgery. Many of them have faced this ... Doctors have told them that they aren't ready for these decisions. Others have failed these clients by making them jump through unnecessary hoops, rather than allowing people to make their own informed decisions.”

To add to the problem, many physicians do not learn about gender, sexual orientation, and disability outside of the medical model. The average is around eight hours — and that focuses on sexually transmitted diseases, fertility issues, and very basic information. As a rare-disease patient already, do I want to possibly have to educate my providers on how to treat me according to my gender?

Do I want to transition?

Honestly, I don’t know.

There are a number of ways I already face discrimination as someone living very publicly with a chronic illness/disability. It’s difficult to add on another, even more misunderstood identity. It’s hard enough to deal with people using slurs around illness and disability toward me.

With the lack of research on hormones, worries around surgeries, and existing medical conditions, it seems like a lot to take on. There are days I really embrace my feminine side, too. Do those outweigh days where living in a female body causes me gender dysphoria? Is there a way to transition as a genderfluid person that wouldn’t cause more dysphoria?

On top of all that, I’m married and greatly enjoy intimacy with my husband. How much would that change if some of my features were more masculine? Would our relationship change meaning?

I can’t answer any of those questions concretely.

For now, I’m okay in the body I’m in. It isn’t easy to exist in a body already plagued by chronic pain, one that’s already different from what is societally acceptable. That said, it gives me strength to know that I’ve already lived nearly three decades defying the odds and rebelling against normalcy. Perhaps, for me, my gender is just another way to do that — no matter what it is.

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