My Experience at the Health Advocacy Summit

By Shahin Saberi

This event was one of those experiences that affects you in ways that are difficult to describe; it’s going to be tough, but I am going to do my best. To give you an idea of what it felt to me, I am going to put you in my head at a certain moment that was very memorable for me.

Samantha Miles, a teen just like me, was talking about her own struggles with chronic conditions. Her speaking skills were incredible, and the content of her speech was so enthralling that I had to snap out of a trance that I was being put in. It was so riveting because what she was saying was such a perfect combination of empowering, relatable, and true. I felt like I was getting a life lesson from someone who’s had years of experience with living through difficulty, but she was my age! I remember, when I snapped out of my trance, I looked around the room, not too obviously, just subtly. And I saw everyone else intently listening to her talk. And that’s when it set in.

This event was beautiful. It was bringing people from all around the state of Indiana, from different walks of life, different passions, different struggles. But at that moment, we were all together in our struggles.


 Sam’s struggles were my struggles. Sam’s struggles were all of our struggles. And yet, she was doing incredible things, even while having to deal with hardships constantly obstructing her dreams. And she wasn’t the only one. Everyone there had been through fights of their own, for even longer than I have been fighting, and they were still on paths to success. They inspired me and made me realize that I am accompanied by people who, through their battles, have developed and matured into strong leaders and amazing individuals. Having ulcerative colitis allowed me to see the courage and strength exhibited by others with similar conditions.


This event was beautiful. It was bringing people from all around the state of Indiana, from different walks of life, different passions, different struggles. But at that moment, we were all together in our struggles.


Before Sam’s speech, I had no clue what to expect from the Health Advocacy Summit. Up until that day, it had always been my mother, my father, and me against my UC. It was lonely, but I wasn’t complaining. I figured, these are my problems, and I need to deal with them. The rest of the world isn’t interested. The Summit gave me the first experience of the opposite. As people poured their hearts out with some of the struggles they have endured and how they’re still standing, how they’ve been fighting their battles since birth, how they are leading initiatives and not letting their diagnosis stop them from pursuing their dreams, I was inspired. I was motivated. And, most surprisingly, I was proud to have a chronic condition.

 While the interactions with the other delegates are what had the most immense impact on me at the Summit, I also took a lot out of the speakers. The first speaker of the day, Louis Belch, gave me an insight into a world of which I was completely naive of beforehand: lobbying healthcare legislation. The concept of “making my voice heard” always seemed so perplexing to me, because, in a world this big and with politics so powerfully influenced by money and corporations, how could I possibly have a voice that matters? That’s been an internal struggle of mine for years, and it’s something I want to change, which is part of the reason why I want to go into health policy in the future. But one thing I took away from Lou’s talk is that there are ways, at least on the local level, of influencing political decisions. To me, this understanding was extremely encouraging. Beyond that, it has inspired me to become more educated on local legislators and lead initiatives to implement policies for the betterment of infrastructural elements that need it most.

Seven of the fastest hours of my life later, and the Summit was over. I sincerely left the facility a different person. I had met new friends, learned new ideas, and joined a new community. A community with whom I can relate to in a unique way, a community that doesn’t judge, and a community of future stars.

Originally, my ulcerative colitis diagnosis was a dismal disaster. Now, I can proudly say that my chronic condition has led me on a path that has changed me as a person, matured me as a man, and motivated me as a dreamer. I’ve learned that the worst can lead to the best.