Published: 03/10/2021 Tags: Stories

Our voices need to be heard

Ever since I could remember, I have had to endure random and unexplainable injuries, body discomfort, and health complications, often what doctors brushed off as “growing pains” my entire life. It started with virtually harmless occurrences, like being able to do weird “party tricks” for my family with my double-jointed ligaments or always being in a cast from doing virtually nothing as a kid, but later progressed to more noticeable events, like frequently dislocated bones, subluxated ribs, circulation issues, migraines, two hip surgeries, fainting regularly, and always being in pain for reasons I could not yet understand. Eventually, I came to the conclusion that something was just not right and I began my search for a proper diagnosis and a doctor who would actually listen to me – not just assuming that I was “over-exaggerating” my very real pain that is not quite “visible” to others.

Freshman year of high school, in 2015, I was finally diagnosed with Ehlers-Danlos Syndrome (EDS) Type 3, now known as hypermobile EDS (hEDS) – and everything leading up to that moment in my life made sense now. Although my diagnosis hit me like a ton of bricks and quite honestly made me feel like I no longer knew who I was, I felt immediate relief and, as I will explain shortly, a new sense of purpose. From the confusing and frustrating parts of my initial diagnosis – which made me feel unheard even by some of the doctors I thought I could trust the most – to the challenges and barriers I still face today, like fighting for reasonable academic or work accommodations or simply being baffled every time my nurses and clinicians ask me, “how do you spell that?,” after explaining I have EDS, my experiences growing up have led me to the career path I am most passionate about: healthcare administration.

They have allowed me to realize how powerful it is to let your voice be heard as a patient and how valuable it is for providers to be open-minded and truly able to understand and listen to their patients’ situations and circumstances – without making assumptions, generalizing, doubting, or stereotyping – while treating, assisting, and interacting with them. These realizations are what drive me every day towards my professional goal to improve the lives and wellbeing of patients everywhere. They are also what I hope to get other healthcare professionals to realize in an attempt to reduce the occurrence of patients nationwide, especially those with “rare” or commonly misunderstood conditions, from feeling lost, unvalued, or unheard by their doctors (since patients themselves know their bodies better than anyone else).

Fast forward to today, I am currently interning at the American Medical Association as a Foundation Intern to try to gain valuable administrative and leadership healthcare experience, while also consistently advocating for EDS as an individual who manages it and sharing my story to increase the awareness and recognition of EDS and all other invisible illnesses as well. I also just began graduate school at the University of Illinois at Urbana-Champaign as a first-year Healthcare Administration Candidate and recently graduated with my Bachelor of Science in Interdisciplinary Health Sciences and a Leadership minor this past May from UIUC as well.

I aspire to use my unique and advantageous perspective as a frequent EDS patient myself – who has witnessed first-hand some of the issues and problems in our healthcare system and in patient-provider interactions – to improve the system as we know it. I believe success in your own career path comes from finding a strong, genuine passion for it and making a personal connection to your work, which is why I hope to one day fulfill the leadership role of a hospital administrator – advocating from a respected position for what I believe in and want to change to improve the care of patients in our sometimes daunting and overwhelming healthcare system.

Most importantly, despite my many medical hardships, both physically and mentally, I am so grateful for my EDS – as it has allowed me to fulfill a role in healthcare that I no longer just want to do, but feel like I have to do. My own experiences as a patient will allow me to better understand and empathize with other patients – the people we are ultimately serving – and to help provide more realistic, innovative, and successful solutions to common challenges and obstacles in the medical world. In doing so, patients can feel less alone, have better quality care, patient-provider interactions, a healthier, more positive, trustworthy environment, and maybe even the diagnosis they have been looking for all along. As someone who has gone through the search for a diagnosis myself, knowing I could potentially make this process a little bit easier and less frustrating for someone else would make me so deeply happy and is something I know I can confidently do in the future as an aspiring healthcare administrator.

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