Not Rare, Just Ignored: When Conditions Aren't on the Curriculum with Ada Port

For years, Ada Port moved through the healthcare system without a diagnosis, despite living with persistent and life-altering symptoms.  Without a clear explanation, it was difficult to speak about her experience, especially when her pain was often minimized or overlooked by providers. Amid her deteriorating health and the absence of a diagnosis, Ada felt lost and confused, like the foundation of her sense of self was shattered. Ada made a promise to herself: once she had answers, she wouldn’t stay silent.

In this episode of The Sick Gaze, Ada shares her diagnostic journey through Ehlers-Danlos syndrome, endometriosis, and visceroptosis, even sharing the shocking reaction following her provider's order for her to do a Beighton Scale Exam at a young age. She reflects on what it means to live for years in the absence of medical clarity, and how gaining a diagnosis gave her the language and authority to begin advocating, not only for herself, but for others. 

Now a medical student, Ada is helping shape a more inclusive future for people with disabilities and those living with chronic illnesses in medicine, from both sides of the exam room. 

Take care of your spoons!
If you're interested in being interviewed for this podcast or want to let me know your thoughts on this episode, email me at dickersonmm@g.cofc.edu and follow @thesickgazepod on instagram!