Stories

Finding Myself in My Rare and Queer Identities

June 25, 2024

I recognized both my queerness and disabilities long before I had words for either. I feel fortunate to have discovered labels to better understand my experiences like non-binary, classical Ehlers-Danlos syndrome, asexual, and gastroparesis, among other words. 

I was born with cEDS, but came out as queer and transgender in my early teens before I had received accurate diagnoses for any chronic health conditions. When I first tried to get help for chronic pain and other symptoms, I started learning some healthcare providers get caught up asking questions about gender and transition status when it’s not relevant or blaming symptoms on identity problems instead of focusing on treating me like any other patient by running tests and managing symptoms. In that time, I ended up being labeled as having treatment resistant mental illnesses as a cause of most symptoms. Delays in care made my symptoms worse, and some progressed in ways that I haven’t recovered from. I felt frustrated and misunderstood for years before finding a care team that, for the most part, sees me as a whole person and not just as a confusing transgender patient.

I was relieved to be diagnosed with rare diseases— they proved symptoms were in my connective tissue and multisystemic, not just my head. Answers meant new management options. Still, I have some specialists who understand my rare diseases, but after multiple years haven’t learned my preferred name or to treat me equally as a queer person. When there’s not many specialists, I sometimes make the choice to worsen my mental health with uncomfortable comments and misunderstandings to  access necessary care for often poorly understood health conditions.

Once I was diagnosed and stable enough to pursue gender-affirming care, I learned even though it is safe with my rare diseases, working out specific challenges for starting hormones was difficult. My sensitive cEDS skin comes with easy bruising and slow healing, which was hard when I did injections. My mast cell activation syndrome means I am sensitive to many medications and different things I come into contact with. A wide range of triggers from going out in warm weather to using the wrong hand soap will give me hives— and so did the first two types of testosterone we tested. I’m still working with healthcare providers to figure out other options for the future. Having a rare disease makes many of my life and healthcare decisions more complicated, and accessing gender-affirming treatments is no exception.

My experiences with queerness and rare disease are inseparable from each other and intrinsic to how I navigate healthcare, even when an appointment is not directly related to one intersection or the other. Both impact every part of my life in one way or change the way I walk through the world. It was isolating to learn not many people have my gene variant and there’s not enough research on some of my health conditions to know a perfect treatment, especially when I already wasn’t sure if I was welcome in some rare disease spaces as a transgender person. Finding people like me at this intersection has taught me skills to navigate my life better.

Being queer and rare means I have some unique considerations navigating appointments. I bring paper copies or send records to healthcare providers in advance because my care is split across many clinics with the hope to avoid spending too much of our limited appointment time together explaining rare disease and gender identity information. When I have a surgery consultation, my healthcare providers need to know both how to safely manage my connective tissue disorder and comorbidities, and that I go by the name “Carter,” which is not my legal given name (if an anesthesiologist tries to wake me by a name I haven’t gone by for years, I may or may not respond). When I see providers for gynecological or pelvic floor care, they need to both understand both how cEDS affects me and consider my gender and relationship history. With each interaction with healthcare systems, I make decisions about how to present myself to get the best care possible and live my healthiest life. 

If there is one thing I want people to understand about my experiences, it’s that my identities cannot be neatly separated from each other. They are all small parts that make up my larger story as Carter: queer, writer, rare disease advocate, cat lover, amateur watercolor painter, Canadian American, non-binary, rock collector, and more. When I step into a healthcare appointment, or really any room, it is often with forearm crutches and a gender nonconforming presentation which impacts my interactions with others, for better or for worse. Earlier in my journey, there were more times where I presented myself from the closet and performed wellness to a breaking point, but I am learning to be more comfortable in my skin and advocate for myself as a visible and proud queer person and rare disease patient. 

Finding my community at the intersection of rare disease and LGBTQIA+ identity means I’m not alone, and neither is anyone else I meet. I feel so lucky to have access to community spaces where I have met other people in both the rare disease and LGBTQIA+ communities. I really appreciated Global Genes hosting its first Rare Pride forum in June 2024 to share community stories and am so proud to be able to contribute to the recently launched Pride in Rare program at the EveryLife Foundation for Rare Diseases. Finding community spaces like these improves my life when I get to make connections with others who share some of my experiences. Every time I get to connect with another person who is part of both the rare disease and LGBTQIA+ communities, I am reminded of our strength as a community and energized to keep contributing to community resources and spaces. The LGBTQIA+ rare disease community reminds me to keep growing and learning and to collaborate in forging a brighter future where people like us can thrive.

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