Growing Into Self Advocacy
When you have been sick for as long as you can remember it can be hard to think about life without discomfort. My earliest memories of feeling sick come with a deep feeling of sadness and anxiety. It’s difficult to piece together the exact timeline, because between appointments and infusions, it strings together in my memory from about age eight to fifteen as a constant stream of pokes and prods.
My chronic stomach condition and anemia caused low energy, uncomfortable days and a lot of missed school. I am fortunate to have parents and a close knit community who have done everything they could to advocate for me, support me and give me hope.
I just wanted to be a normal kid, and so sometimes burying my concerns or frustrations seemed like the easiest way to accomplish this. For a long time when I felt sick, there were no clear answers or triggers, so everything felt like walking on very thin ice; and I didn’t know when another flare up or rough period would come.
As I finished high school and went on to college, I still had some discomfort and continued to need iron infusions, but it became normal enough that I felt I could manage. This feeling of finally feeling like I was in somewhat control of my care came crashing down when I began to feel sick in different and more extreme ways than I had before.
Post college, I was feeling sicker and sicker, and I knew I couldn’t manage it myself. It’s hard to ask for help, support, or push for answers, but I felt that educating myself as a patient and advocating for myself was the only option to have the quality of life I hoped for. It took a lot of searching, researching, changing doctors’ multiple times, testing and retesting, but I knew these components were crucial for me to receive the answers and care I needed.
As I have matured and grown as a person, I feel that I have learned the value of advocating for myself. It was very challenging for me as a child to explain how I was feeling, the emotional impact it was having on me, and what I needed from those around me. Now, I find myself talking about my health condition, Celiac Disease, with family, friends, and even strangers. I talk about my condition so that I can educate others, be honest about my energy and capabilities for day to day things and get support or provide it when needed. It has been a completely different experience reliving through the patient experience in this capacity as a young adult, but I feel more informed and empowered than ever before. Finding other patients to talk with about my condition in online support groups, having a medical team I trust and value, and a game plan for when a flare up or discomfort occurs help me manage both my physical condition and the emotional impact it has on me. I encourage all young adults facing a serious medical condition to let others in, ask for help, create a care team you are confident about, and become as savvy of a patient you can for yourself-and others.
Ruthie Schorr is 26 years old and originally from Seattle, Washington, and now resides in Miami Beach, Florida. Ruthie has faced a chronic stomach condition Eosinophilic Gastroenteritis and anemia since she was a child and was recently diagnosed with celiac disease. She works in patient education and spends most of her free time traveling and doing activities like scuba diving, hiking, and biking.