Blog Katie Allen Apr. 2023

I was 12 years old when I started receiving laser treatments (that’s me with the awful haircut about a month after the first one), 17 years later the marks look vastly different, though the asymmetry will always be there. Even with years of self-reflection and confidence gains, I still struggle to take a photo face-on, feeling it highlights that asymmetry. This is despite knowing I see the asymmetry far more prominently than anyone else ever will. Sometimes self-acceptance has to be learned like any other skill and takes constant refresher courses to maintain.

One of the other skills I have learned is navigating medical professional personalities. This seems a bit ridiculous, but once you work with various medical professionals, especially outside the pediatric and children’s hospital realm, it becomes clear this emotional skill is vital to getting the care you need. The 12-year-old me in the above photo was attending about 75% of my doctor appointments alone, and I quickly learned how hard it was as a young woman to be taken seriously as an expert on my condition.

I learned over time and trial-and-error which doctors wanted straight facts, for me to speak like the expert I am on the condition I have lived with every day of my life, while others would only help if I posed my thoughts in questions and deference, slowly trying to lead them to my needs and condition. Overall, this negotiation of personalities is something everyone faces, but for me, and I imagine many with rare diseases, who see dozens or more doctors over their lives, this is a surprisingly exhausting part of medical care. I hope one day the next 12-year-old Katie never has to feel like she is not skilled enough at describing her condition to deserve medical care. Hopefully, we, as advocates today, can change this for them.