Published: 19/01/2023 Tags: Stories

My medical journey shapes every facet of my life

When I was young, I had a strong desire to change the world. I thought (optimistically) that I would become such a well-known and beloved actor that I could become a philanthropist too, and maybe end world hunger or save some species from extinction. As a singer, dancer, and actor, I thought this was a great way to do what I love and still make a huge impact. However, I couldn’t settle on any single cause for too long, as there are so many worthy ones worth funding, volunteering for, and working for.

In a somewhat sardonic way, my body falling apart led me to find the cause, the one worth fighting for, for the rest of my life. I had some of the tell-tale symptoms as a child; extreme flexibility, easy bruising, terrible PMS, migraines, and sensitive skin… but my truly debilitating pain started when I was 21 with the diagnoses of pelvic floor dysfunction and vulvodynia.

Just as I was graduating college and trying to live my young adult life to the fullest. My worsening pain and new conditions that would pop up every few months (ex. Tendonitis, POTS, gastro issues, etc.) kept me from teaching abroad or moving out of my mom’s home. The financial burden limited my ability to pursue the life I wanted. My options were becoming more restricted – I couldn’t help but focus on the pain at hand and what possibly could be causing it. This was the beginning of my purpose.

For a long time, I felt completely directionless, as if I was in a pitch-black room and someone had put a puzzle in front of me to solve. Except on top of not being able to see it, I also didn’t know how to tell when the puzzle was completed or if I even had all the pieces necessary to complete it. I was grasping at books, chronically ill friends, disability activists, anything, and anyone I could find to relate to and learn from. Anything to get my pain down from an 8 out of 10. Anything to feel less alone.

Writing and speaking about it helped and continues to help. I write articles and post to social media to spread awareness. I also speak with classes to share my story and answer vulnerable questions from brave and curious students. These experiences were an ice pack to my pain.

It worked organically that I pursued a master’s in library and information science while also researching and formulating what my symptoms might really mean in terms of diagnosis. Graduate school gave me something to live for again along with giving me the tools to do some intensive health-related research. By the time I graduated, I had successfully self-diagnosed (and been formally diagnosed via rheumatologist) myself with hypermobile Ehlers-Danlos syndrome (hEDS).

During my personal research and formal studies, I combined both and became infatuated with the concept of medical librarianship. Health Science librarians can work in colleges, public libraries, hospitals, medical libraries, government, and even for-profit companies!

I also learned much more about myself and my identities than I had bargained for. During my chronic illness diagnosis process, I introspected and learned that I am queer, trans, and nonbinary. It has been a confusing process that I am still actively engaging with. I am having top surgery this summer and I can’t wait to feel just a bit freer. A disproportionate percentage of the LGBTQIA+ communities are also disabled and/or neurodivergent. Learning facts like these from online groups, articles, and friends have led me to realize new facets of myself and continue to pursue more (currently on a waiting list to be evaluated for autism!). Using they/them pronouns, having an X on my license, and finding gender-affirming ways to present myself in this world- I cannot separate these experiences from my experience as a person with EDS.

All my identities converged with my recent internship with the University of Minnesota Health Sciences Library, where I was able to speak on and lead dialogue concerning intersectionality and anti-racism in the health sciences with the HSL staff. My experience as a disabled, trans, and queer person gives me a unique vantage on seeing the often-invisible systems that continue to oppress minoritized peoples.

I can only be an expert on my own experience, but I hope I can use that (and my MLIS) to subvert the health system in such a way that everyone has access to excellent universal healthcare, where health outcomes are not dependent on the color of your skin, pre-existing conditions, religion, age, sex, gender, and chronic illness or disability (among many, many more).

My health has never been worse (ha!) but hEDS has been a baptism of fire for me, leading to a clearer purpose than I have thus far known.

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