Patient to Pageant- Sharing my Invisible Illness Story

She’s Beauty, She’s Grace, She’s Talented

I scrolled through my Instagram feed one night and saw Miss Racine 2018, Jennifer Schmidt, post that the Miss Racine Competition, a local pageant within the Miss America Organization, was looking for candidates for the 2019 show. Her social impact initiative was inspired by her Grandma’s battle with Diabetes.

I thought to myself, “Another person with an invisible illness. I’m so glad that she is advocating for this cause.” “I could never do a pageant, I’m just a patient. My talents don’t fit the criteria. I can’t wear a bikini on stage, my feeding tube will show. My skin is so pale and my hair is so fragile.” I continued to think of reasons why I couldn’t. Yet, there was piece of me that wished I could. I switched to Facebook, because after hours and hours of insomnia, it is just what I do to pass the time.

More than just a Monologue

There it was…a video clip that inspired it all. Nurse Kelley, otherwise known as Miss Colorado 2016 and Miss California USA 2018, began to share her story about being a compassionate nurse. Her talent, an original monologue, brought me to tears because even though she didn’t sing, dance, or play an instrument, she has a talent that impacts people outside the four walls of the competition. Her talent has saved my life numerous times. It certainly deserves an award.

I knew what it felt like to be her patient and thought to myself…It is a talent to survive the circumstances of having a rare, incurable, invisible illness. I thought to myself “I’m going to message Jen aka Miss Racine 2018 and get involved.” And so I did…

Real stories, Real people, Real Miracles

I learned that the Miss America Organization has a partnership with Children’s Miracle Network. Who knows more about this than a miracle kid herself?  I am a patient, but now I’m someone who does pageants to advocate for patients. I instantly knew that even if I didn’t win, there was going to be some benefit to this experience.

When I was 16 years old, I made a promise to myself in a doctors office. That promise is, even if I struggle, for all of my days, as long as I use my story for the greater good of others, then this is a life well spent. It occured to me that the quality and purpose of my life isn’t determined by how healthy or sick I am, but how I live a great story despite those factors.

I have the Power, I have the Control

I was so right to message Jen that night and her kindness will always hold true in my heart. Living with Mast Cell Disease, Neuropathy, Gastroparesis, Endometriosis, Dysautonomia/POTS, Angioedema, Bradycardia, Malnutrition and so on has been so controlling. I mean, I can barely remember to take my meds, let alone remind myself, that I am doing a good job.

Like Jen’s social impact says “You have control.” She was right, I have the control to advocate. This time, I got to push the envelope and step out of my comfort zone because I wanted to. I wanted to do the unknown, but not because I had no choice, or that I was forced, but because I had every choice to do something with this situation, that is greater than any disease or any pain, that I may entail.

Patient to Pageant-It is possible

If you are unfamiliar with pageants/competitions… don’t worry because just like my journey with an invisible illness, it is about figuring it out as you go. I learned that from our current Miss Racine 2019, Ashley Monti. My boyfriend’s brother, Kevin, said it best “It isn’t a race, it is your marathon.” So how did I get to where I wanted to be? I’m not completely there yet, but the support, love, and compassion from others helped to prepare me for the competition.

I’d be fool to say that the girl on the stage is only a representation of who I am and I’d be a fool to say that I’m the only one affected by an invisible illness. That’s how I determined my social impact initiative, “But You Don’t Look Sick” The Impact of Invisible Illnesses.

Don’t Judge a Disability Based on Visibility

I can’t forget to thank Nurse Kelley, Jen, Caitlin, Haley, Ashley, Tara, Alyssa, Elise, Meghan, Naomi, Kylie, Chelsey, and Miss Wisconsin. I could go on and on about this community, but we’d be here FOREVER.

So what did I do when I went on that stage? First, I had to practice because who knows what would’ve happened if I tried walking in heels only a couple hours prior. The different phases of the competition are: Interview, On-Stage Interview Question, Lifestyle/Fitness (Swimsuit), Talent and Evening Gown.

Got a body? Put a swimsuit on it.

My favorite phases of the competition were the swimsuit and talent portions. I may not be a size two, but I have body that I am proud of.  I felt the most empowered that I have ever been in my life, when I got to showcase to the crowd, the body that has withstood this storm. You betcha, I wore a bikini.

While the judges look for an overall healthy appearance…I can say that my autoimmune disease has made physical differences, but my mentality and health is good. It is good and I’m not in denial about being ill. For someone who has undergone so much trial, this body has held up and it is the body that has helped me achieve so much. It’s pretty awesome body even though it’s tried to kill me once or twice. Laugh so you don’t cry!

Advocacy is a Talent

I remember when Mrs. Debra asked me “What is your talent?” and I knew that even though as a child, I was a gifted musician. My talent is my ability to advocate, to write, and to public speak. Nurse Kelley gave a monologue so I knew that I could too.

My monologue was inspired by the reason I believe I need to advocate. People are unaware, uneducated and misguided about illness. I didn’t sing a song, but this is my anthem.

Thank you, Aunt Laurie for this recording.

“Walk a Mile in their Shoes” Original Monologue by Emma

In the movie, Dumplin, they said “Go Big or Go home, but either way do it in a red pair of heels.” I didn’t win the title of Miss Racine 2019, but I did win being able to share my story. I congratulate Ashley because she is a great example to follow. I consider that a “W” and I won the best version of me, because I fulfilled advocating for patients and those who live with invisible illnesses. I earned the “Spirit of Miss America Award” and walked away knowing that this organization embeds service, style, scholarship and success.

Nurse Kelley once said “I am not just a nurse.” I realized, I am not just a patient. I am so much more.

Beyond the make-up, the show, and the glitz, these women are dedicated to their platforms and live out the qualities of Miss America, each day.  I didn’t think that the Miss America Organization was for me, but I was wrong. I’m so glad I took this chance to do something new and to commit to the promise I made myself.

What’s Next?

I’ll continue to compete, master the interview, hopefully learn not not say “um”, memorize my monologue so that I can say it in my sleep, connect with other girls, and most importantly, I’ll strengthen my voice to be the best advocate that I can be.

Hats off to The Miss America Organization

They don’t want pageant girls. They want real girls. While the experiences I have entailed have attributed to my maturity, I can thank the MAO for strengthen the love I have for my community, my voice, and patients.

One Last Thank You

Lastly, thank you to the individuals who provided me with wisdom and guidance. To those who encouraged me to do this, thank you. To my hairdresser Allen, thank you! I felt incredible and unstoppable. To Esme, thank you for dollin’ me up and doing my make up!

To those who donated to my personal CMN fundraiser, you are helping make a difference in lives like mine! Thank you to my parents and family for your support. I know pageants are new to our tribe, but you never let me down! To my cousins, aunts, uncles…I love you. To my Grandma, thank you for having one hand in heaven and one on my heart. To my Guardian Angels, thanks for looking over me. To my loving boyfriend and his parents, thank you for loving me and showing me unconditional support. To my friends in the fight, thank you for listening to me, reminding me to never give up, and for inspiring me. To the warriors and patients, thank you for letting me advocate for you. I can’t forget to thank Haley, Ashley, Tara, Alyssa, Elise, Meghan, Naomi, Kylie, Chelsey, and Miss Wisconsin. I could go on and on about this community, but we’d be here FOREVER.

Special thanks to Debra, and Caitlin…Words will never be enough. Thank you for sharing your experiences with invisible illnesses, for empowering me, for sharing your expertise, and preparing me for this competition. It must be that pug momma connection!

Thank you Alyssa, Tara and Haley… You helped me learn the walk, be confident in my interview and reminded me to love who I am.

Thank you, Nurse Kelley and Jen for providing me the strength to jump into this world. You have changed my life for the better. You are right, we are more than we think we are.

That’s my story, and I’m Sticking to it.

Never forget, you never know the circumstances that someone is in. Believe them, support them, and walk a mile in their shoes before you judge them.

Remember the red shoes.

XO Em

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