My Life with Meds: a Lifetime Prescription

I have taken pills every day since I was 18 years old. Well, I’ve been supposed to take pills every day since I was 18. The truth is sometimes I just don’t want to take them. Somedays the idea of being reliant on pills for my wellbeing is just too much. Somedays I just give up.

Let’s take things back to the fall of 2010. I was in my first semester at Northern Arizona University and had just had my first visit to a gynecologist. The entire experience had been nerve-wracking. Not just because visiting the gynecologist for the first time is pretty freaking terrifying, but also because I was visiting because at 18 years old I had never had a period. I was starting college, and yet I had somehow missed out on the quintessential after school special school-age female experiences of bleeding through my underwear, fighting with tampons, and worrying about trips to the pool. As time went by I had simply ignored the growing unease that something was wrong with my body until I finally had to admit that I needed to see a doctor.

I remember the day my mom told me about the results of my blood test. A few weeks before they had drawn 9 vials of blood with the promise that they would run every test imaginable to try and find the problem. That day my mom drove the 3 hours up Flagstaff in order to tell me the results in person. She sat with me in my dorm room and said “While they were doing some basic tests they noticed XY chromosomes. They thought they had made a mistake, but they didn’t.”

That day changed me in ways I am still discovering.

This is my first time writing about this so publically, so I suppose I’ll just say it. I am intersex. Intersex can mean many different things. For me, it means that while I have a mostly normal female body, I do not make my own female hormones and cannot have children. My specific disorder affects something like 1 in 150,000 people born and does not affect my life in any way other than the fact that I cannot have children despite being externally completely female and that I will have to do Hormone Replacement Therapy (HRT) for the rest of my life.

Luckily for me, HRT is pretty simple. In fact, hormonal birth control pills are all it takes. The problem with HRT, for me, is much more psychological.

I hate the fact that I will have to see doctors periodically and take pills every day for my entire life. I hate it. I hate visiting doctors and having to explain my situation. Somedays I don’t take my pills because I need to have that small rebellion. Somedays I’m tempted to stop altogether despite the long-term health risks. Quitting my pills wouldn’t immediately endanger my life, but instead would slowly chip away at my body in the various ways a hormonal imbalance can.

My freshman year at NAU was what I call The Year of Medical Appointments. It began with blood tests and ultrasounds. After finding out my chromosomes were “incorrect,” they had to, as one doctor eloquently told the terrified 18 year old me, find out exactly what I was.

Then came the HRT, the crying, the surgery to remove the useless streak gonads, and the search for a doctor who would give me more birth control pills after the first prescription ran out. You would think it wouldn’t be hard to find a doctor who could write you a prescription for birth control, let alone medically necessary birth control, but in the last 5 years I have discovered that is decidedly not the case. Doctors refused to write my prescription because they didn’t understand, or as another doctor told me, because it was “weird.” (Weird, I have learned, is an uncomfortable and unprofessional way to say that you don’t understand.) After countless vials of my blood, I finally found the wonderful woman who patiently listened to my story and then asked, “So you need pills to stay a woman—if that’s what you want. Is that what you want?”

And that is how I chose to be a woman, and how I still choose to be a woman every time I take my pills. But even though I choose to take my pills, I hate feeling reliant on medication for something as intensely personal as my gender identity. For me, HRT is a fight to hold on to something I shouldn’t have to fight for. HRT keeps me “normal”, but makes me feel anything but.

I have a very complicated relationship with gender. To me it is such a fragile idea. For me, gender can be as simple as taking a pill. Of course that is not the whole truth. Gender for me is also growing out my hair, wearing make-up and floral prints. There are many ways in which I choose to express my gender, in which I have to intentionally express my gender in ways that other people do not have to pay so much attention to. My understanding of my own gender and sex is a soup of pills, passing comments from strangers, rude doctors, nice doctors, friends, media, and above all, my daily medication. Medication has become a part of my identity in a way that is unavoidable and uncomfortable.

I’m not saying I have these thoughts every time I take my meds. Most days pass with the routine of thyroid meds in the morning and birth control pills in the evening without any particular thought. But since I began the search for prescription refills in Japan for the first time, all of my old feelings are rising to the surface and flooding my mind.

Looking back over the last five years at all of the blood tests, the appointments, the nurses who don’t know how to react, and the feelings of being an animal on display fighting for my survival come rushing back to me as I begin to start all over again.

My medication and my identity as an intersex woman are usually not in the forefront of my life. They are the Pottermore to my Harry Potter: largely ignored and rarely relevant. Sometimes, though, my backstory helps me understand the complicated feelings I have when someone calls me “sir” at the grocery store, or when someone compliments my hair, or when I visit a new doctor for the first time.

Luckily, my visit to the clinic here in Japan was relatively painless. It was a busy Tuesday afternoon, and the doctor simply asked if I felt my current dosage was fine, took some blood, and sent me on my way with one month’s prescription. There are good days, and there are bad days. As my life goes on and the good days accumulate, I feel like things normalize. If moving to Japan has taught me one thing it’s that you can adjust to anything if you give it enough time. It’s different, though, when what you are adjusting to is something in your body. If I feel overwhelmed by my life in Japan I can lock myself in my apartment and watch Bob’s Burgers on Netflix while eating peanut butter and drinking black tea until I feel alright again. If I feel overwhelmed by my chromosome disorder I don’t really have anywhere to run to. As someone who likes to run (metaphorically, let’s be honest) from just about everything in life, I think that is what makes being reliant on pills so difficult.

I certainly can’t work through all of my feelings about being intersex or having to take meds every day in one post. I may not even work through all of them in my lifetime, but I don’t think that makes it any less important to try. Human bodies are weak and ridiculous, and the more people you meet the more you realize how many strange and obscure health problems we can be born with or develop over time, but human spirits are strong and beautiful, and we have the ability to create, to understand, and to overcome. Somedays I hate having to take my medication, but it is a metaphorical pill I have to swallow as well as a literal one. My medications allow me to continue to have a wonderful life without worrying about my health. It doesn’t seem fair that I have to take them in order to have my health be on the same playing field as a “normal” person, but how much in life is really fair? There are so many opportunities I have had that others have not, and if all I have to exchange for that is a few pills a day and the ability to have children, well, maybe that’s alright.

Today, anyway, that’s alright.

 

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7 thoughts on “My Life with Meds: a Lifetime Prescription

  1. Thanks for sharing info on this, for being awesome (as always haha), and for sharing your personal life experiences. It’s a really interesting topic and while I had actually learned about it in one of my honors classes my first year of college, we didn’t go too far into the subject. I’ve had some friends who have gone through some similar things. I’ve wondered if it might occur slightly more frequently than current statistics show. Do you know if it’s something a doctor can figure out just with a routine blood test or does it take more in-depth testing?

    Any who, thanks again for another thought-provoking and inspirational post. 🙂

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    • Thank you for commenting! I think it’s difficult to say because there are so many variations that fall under the same umbrella term “gonadal dysgenesis” (the techinical term for my condition). Finding the “wrong” chromosomes can be found with a simple blood test, but after that more extensive tests need to be done to see how that has affected the body over time. They have to do ultrasounds to see how the internal sex organs formed and blood work periodically over time to make sure everything is functioning properly in the thyroid etc. I know when I had my surgery the doctors were pretty excited because aside from the specialist it was not really something they had seen before. They asked my permission to have their students in the surgery with them.

      I hope that answers your question at least somewhat. If you have more questions please ask! And thanks again for commenting! You’re great!

      Like

  2. This left me in tears. I am so completely impressed by you. And I wish you the best in everything you may encounter. Just know that you have a lot of support all around the world and people who genuinely care about your well being as well as your happiness. xoxo

    Like

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