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This Is What ‘Invisible Illness’ Looks Like

May 18, 2018
From the WebMD Archives

By Victoria Graham
As told to Jennifer Clopton

“But you don’t look sick.”

I hear this sentence easily ten times a week. I’ve even heard people yell at me in public for parking in a handicapped spot, saying I should be ashamed for “stealing my grandmother’s pass.”

What people don’t realize is, despite how I may appear on the outside, pain is my constant companion. I take 31 pills to manage 12 different diagnoses that have no cure and very little treatment. My main illness is a type of Ehlers Danlos Syndrome (EDS), a connective tissue disorder that started presenting symptoms at age 10. I’ve had ten surgeries to fuse nearly all of my spine and fix my skull when part of my brain was literally leaking through it. I have problems with every organ in my body. I have blood clots in my brain, dystonia episodes that resemble seizures, and parts of my digestive system are paralyzed. My potassium and magnesium are difficult to balance, which can cause me to feel lethargic, have difficulty breathing and swallowing and lead to bouts of paralysis that can last hours or days.

But despite all that goes on inside my body – I don’t look sick on the outside, and this consistently shocks people, who often express amazement at how “normal” I look. People have an image in their mind of what a “sick” person looks like – and I have broken that mold my whole life – especially since I started doing pageants at the age of 21.

Pageants have helped me to see my own beauty, and they’ve given me a platform to share that realization. When I’m on stage, I don’t hide my illness. In the swimsuit or lifestyle portion of pageants, I proudly show the 25-inch scar that runs from the top of my neck all the way down my back. And during the talent competition, I walk onstage in a hospital gown, loosely sewn together. My scar is visible as I deliver a monologue about overcoming my medical challenges and the challenges of others.

As a child I didn’t have a role model going through an invisible illness to look up to. Now I’m in a position where I can be that person for others and I take that so seriously. I want others dealing with invisible or visible challenges to know there is beauty in their story and their scars and I hope seeing me on stage – winning crowns and fulfilling my dreams – helps them see the beauty in themselves.

But I already feel like a winner because I’ve found my calling and my passion. Through my foundation called The Zebra Network, I speak at schools, deliver soft blankets to hospitalized children wearing my crown and sash, and work to increase awareness, education, advocacy and support for patients with EDS and any other rare, chronic, or invisible illness.I’ve won three crowns in Maryland since 2016. In June, I’ll head to the Miss Maryland competition – and if I win, I’ll get to compete for Miss America.

I hope that my advocacy will help people see beauty and health differently, and maybe cause people to think twice before they say, “You don’t look sick.” Because people with disability placards on their cars or license plates may not look the way you expect. They might even be a beauty queen.

Read more of Victoria’s story here.

24-year-old Victoria Graham lives in Maryland. She works for US Congressman, C. A. Dutch Ruppersberger (MD-02), on Capitol Hill and runs The Zebra Network. She travels just about anywhere to deliver motivational and keynote speeches. She is working to simply, “make the world a better place.” To learn more about Victoria, you can visit her website at VictoriaLGraham.com and follow her on Instagram @victonation.

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