A COMPLEX PATIENT

In 2023, I was diagnosed with hypermobile Ehlers-Danlos Syndrome (EDS) – a chronic, body-wide condition, along with two common comorbidities. Though I was already living with one chronic illness, I have struggled diMerently with this diagnosis. My understanding of my “self”, my capabilities, and the future I envisioned all came into question. I struggled to get the care I need. No one doctor specializes in EDS – you need a care team, and you have to put it together yourself. Any condition that spans multiple body systems is challenging to get care for in our healthcare system. And, the number of health care professionals who have heard of EDS, let alone are knowledgeable in treating it, is quite low, even in a densely populated metropolis like Chicago. I am a complex patient with an “invisible” illness. This series is my way of processing my experience, making sense of my journey, and increasing awareness of this genetic condition.

As ideas for this series come to me, I let the medium I work in be determined by the “best fit” for the message I am trying to convey. As a result, this series spans a wide range of mediums. My list of ideas is longer than I have had time to make, so it will be an evolving body of work.

2023 - 2024