To the Person Who Left Me a Rude Note After I Parked in a Disability Spot
You left a rude note on my car that said, “Handicapped? Low life!” after I parked in a disability spot. Even though I had a disability placard in my car, it’s clear you still didn’t believe me.
Instead of being upset by it, I would like to take this moment to educate you and to advocate for everyone living with an invisible disease.
I have an invisible and undiagnosed rare disease and so do my three children.
Even though I don’t walk with a limp, every single step hurts.
Even though I’m only 43 years old, my body hurts and I wouldn’t wish this pain on my worst enemy.
Even though I don’t have a name for my undiagnosed progressive, aggressive osteoarthritis in my distal joints, my hands hurt and there is no medicine that makes the pain stop.
Even though I have a torn capsule in my left hip, I refuse to have another hip surgery due to the recovery period.
Even though I have temperature intolerance, I still have to walk in the freezing cold and the intense heat with fatigue and pain.
I could go on and on about why I have a disability placard or why I have it for my children, so I shouldn’t feel like I need to defend it. However, I felt bad having to explain to my three children why someone would be so mean to us.
I actually felt sad for you. I felt sad that there is a person in this world who he thinks someone would falsely put up a disability placard in order to get a good parking space and would take the time to write a mean note.
I’m proud of my disability placard, and I appreciate it every single day. It’s a badge of honor because it proves I have doctors who believe my pain is real and that the pain my children experience is real as well.
I truly believe your note says more about you as a person. This is why I continue to advocate for my children and for all rare and undiagnosed children. We live in a world where people judge you by the way you look. We live in a world where doctors don’t always believe you when you tell them there is something wrong with your child or with yourself.
As a mother of three undiagnosed children and being undiagnosed myself, I will continue to advocate until everyone in the medical system and the public understands what it feels like to live with an invisible disease.
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Gina Szajnuk (Zanik) was born and raised in Madison, Wisconsin. She serves as the Co-founder and Executive Director for the Rare and Undiagnosed Network (RUN), a 501©3 nonprofit organization. Her three children, each of whom live with an undiagnosed rare disease, continue to inspire and motivate her to empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support. Gina is also living with an undiagnosed rare disease. In 2016, Gina was the Chair of Utah Rare and made Utah the #1 state for Rare Disease Day. She was on the Executive Committee for Utah Rare for four years. Gina continuously works to build a network of rare advocates, geneticists, researchers, specialists, and volunteers who can come together under one platform. She is a member of the Participant Engagement and Empowerment Resource (PEER) of the Undiagnosed Diseases Network (UDN). She is a member of the Undiagnosed Disease Network International (UDNI) as well as the Rare Disease Diagnosis Consortium. She has been asked to be a Rare Disease Advocacy Professional for The Rare Advocacy Movement (RAM). She served as the National Organization for Rare Disorders (NORD) as their Utah State Ambassador and then as their Undiagnosed Advocacy Ambassador for four years. She is currently working to launch, as the Co-founder, a new platform, RUNmyDNA.com. She is a public speaker as well as a contributor to The Mighty. She is married to Justin Zanik, the NBA Utah Jazz Assistant General Manager. Through her husband’s position in the NBA, Gina has brought awareness to the NBA about the importance of rare and undiagnosed diseases through RUN's NBA Initiative started in 2015. In 2016, Gina won the Rare Voice Award from the EveryLife Foundation for Rare Diseases as well as accepted the Rare Champion of Hope - Advocacy Award from Global Genes. She graduated with a Bachelor of Arts from the University of Wisconsin – Madison.
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