What being an advocate means to me!

 Being an advocate is dear to me. Being an advocate for me means bringing awareness to the health difficulties that have made me the person I am today. Advocacy for me looks like bringing awareness to invisible illnesses and mental health. Due to being diagnosed with Polycystic Kidney Disease (PKD) at such a young age, I felt that meant I was automatically different from the kids my age. Just because a kid is diagnosed with a chronic illness doesn't mean that they are any different from kids their age.

   Looking back to 8 years ago when I was diagnosed, that wasn't my mindset. Due to having the PKD diagnosis and missing a lot of school, I felt that I stuck out like a sore thumb. However, in all reality, I was an 8-year-old kid. I loved playing outside, riding my bike, and playing softball, and yes I had that diagnosis. Did that illness make me very tired very fast? YES! But, that didn't keep me from participating in the activities that made me, ME. I want kids who feel like they are different due to their diagnosis no matter what that might be, to know that you are no different! You are just as much a kid as your friends are.

   I can remember back to my diagnosis that I have always wanted to make a change in the way mental health and invisible illnesses are viewed in schools. Whether that school is public OR private, I feel that no matter what children should all be treated equally and with respect when it comes to their health. One of my struggles since my diagnosis is that since people can't see my illness they don't believe me, this caused me to even not believe myself at times when I was sick. I get that feeling still to this day. I would and still do push myself to the point where I'd be in bed for weeks at a time due to being so exhausted. It wasn't just my classmates either, it was administrators as well.

   Before my diagnosis I LOVED school. Once I started missing school due to symptoms relating to PKD that's when my love for school ended. Teachers would call me out for missing school in front of the class and would even bring up my grades at times. This is something NO kid should go through. The embarrassment and self-esteem damage those encounters brought me at such a young age was very damaging. That is my why for advocacy. That is why 'The Seen Project" was founded. Over the last year and a half, I have finally gotten the courage to advocate for myself. Sticking up for myself when I felt that my invisible illness wasn't being SEEN, UNDERSTOOD, or validated for the daily obstacles it would put in my way.

   It's took me 8 years to feel comfortable sharing my story. Now imagine how many kids are scared to share theirs. Approx. 1 in 4 children have at least one chronic illness. Sharing my story with hundreds of people online, on TV, and the radio is something I never thought I'd have the courage to do. But here I am, doing it for the kids who can't, or for the kids who don't feel SEEN, UNDERSTOOD, or validated. I'm an advocate for kids who have mental health and or Chronic Illnesses. I'm an advocate for the kids who don't yet feel comfortable sharing their stories.

That is what being an advocate means to me.