Being Transgender and Non-Binary in a CF World

Navigating the intersection of transgender health care and cystic fibrosis care has had its ups and downs, but I've become an effective self-advocate and intermediary between my two health care teams.

| 5 min read
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Rowan Greenlaw
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Cystic fibrosis doesn't define me, but I must admit it does impact most of my life in some way or another. 

When I started talking to my care team about transitioning a couple of years ago, it was new territory for all of us. The fact is, there isn't a lot of research on long-term effects of transgender health care, never mind where that intersects with my CF care. Each time I ask my team a question, it feels like a new research project. For a long time, I searched the internet for other trans CF folks but always came up empty. That's the reason I'm writing this blog. I refuse to believe that there aren't plenty of people with similar enough questions to those that I had! 

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Having a little fun in front of 50 tourists waiting to take serious photos with the bridge.

My first hurdle was with chest binding affecting my breathing. CF primarily affects my respiratory system rather than my digestive system and as with everything, this has certain pros and cons. When I first brought up this topic a few years ago, no one had an answer about whether chest binding would be particularly dangerous or harmful. I actually got a few responses that were either wrong or would be potentially damaging long term.

As difficult as it was to figure out, it was the beginning of a very important dialogue between me and my care team. Now I'm confident that I can speak freely with them. Even if they don't know the answer to a question or issue, they are upfront about it, and we find answers together. Likewise, they know that they can ask me questions, whether about my experience with transition, or how I navigate the world using gender-neutral pronouns. I find that as long as I'm comfortable answering, it's typically in my best interest to do so -- if not for my own health and experience, then for someone else's benefit.

I've been surprised with how often my CF care and transgender health care overlap.

Sometimes it's positive and other times, not so much. One of my earliest examples is learning how to give myself shots. There was approximately a year of time between beginning talks about transition and starting to take hormones. Within this year or so, I was hospitalized a few times, which meant taking blood thinner shots. I took this opportunity to finally start doing them on my own, so that I was more prepared to do my hormone injections at home.

My favorite overlap however has to do with food. I've often said that food is my number one love in this world. As a CF patient, I'm always keeping an eye on my calorie intake and making sure I'm eating plenty of protein. After starting hormones, it was like having “second puberty.” With this comes an increased appetite and energy levels. My hormones were making me want to eat and exercise more! Both these things can only benefit all aspects of my health. In other words, bring on second breakfast!

Although it's great that I have managed to improve the communication between me and my CF care team, there is another aspect to this tangled system. I have had to get increasingly better at being a professional self-advocator as well as a competent intermediary between my CF team and my trans health team. This can be frustrating at times, but until all the different medical chart programs can talk to each other, it's a necessity. Unfortunately, there is a lot of, “he said, she said, they said,'' involved with this -- usually about medications, drug interactions, and lab tests and results. Sometimes I wish that my doctors would just message each other, but I'm aware that this is more of a pipe dream rather than a practical plan. When you get down to it, my CF team doesn't understand queer and trans issues, and my trans team doesn't fully understand my cystic fibrosis needs. 

For anyone that feels like this resonated with them, rest assured you are not alone.

I've come to think of myself and the precious few other queer folks I've connected with online as a community within a community.

Like all other CF-related peer communication, the internet is a blessing. There are Facebook groups and threads that can be found with enough digging and perseverance. We've all got each other's backs, and we will have yours too. See you on the internet!

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Rowan was diagnosed with cystic fibrosis at age 7. Today they live in Boston with their two turtles. Although they work as an architect, in their free time you'll find Rowan either traveling abroad or playing games with friends. They are currently over halfway to completing their goal of visiting all seven continents. Over the past 10 years, they have given talks to employees at different pharmaceutical companies and volunteered their time on different panels at Brigham and Women's and Boston Children's hospitals. If you would like to see more of Rowan's story, they post their travels on Instagram (@_rowanaway).

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