8 Times Victoria Graham Made the Ehlers-Danlos Syndrome Community Proud
At the Miss Maryland pageant this past week, the Ehlers-Danlos syndrome (and chronic illness) community were represented by one of their own: Victoria Graham, a 23-year-old with EDS, who competed with the platform, “But You Don’t Look Sick: Making Invisible Illnesses Visible.”
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
Graham was recently named Miss Frostburg, earning her a spot in the Miss Maryland competition. Though she didn’t win, Graham’s commitment to using her platform to educate people about invisible illnesses was inspiring and empowering, and we’re grateful for the advocacy work she did for the community. We rounded up eight times Graham made the community proud. We’re cheering you on, Victoria.
1. While speaking with StudyBreaks magazine, Graham revealed the answer to the question, “Why participate beauty pageants?” She explained a truth so many others with chronic illnesses can relate to — as her illness progressed, she couldn’t participate in the same activities she used to. But she realized she could still try out for a pageant, a “bucket list” activity, so she decided to go for it while she still could:
Sports had been taken from me. Most of my social life had been taken from me. I was on a reduced course load, so school had been taken from me. So many aspects of my life had been changed in ways that I had no control over, so I wanted to do something for me while I still had the ability.
2. In an interview with the BBC, Graham explained that she’s lost friends and boyfriends because of her frequent surgeries and that she tries to be understanding and not take it personally. But the goal of her platform is to help these people see that illnesses come in many different forms and that their understanding would go a long way:
If people are able to be empathetic to my situation in the same way — by recognizing some illnesses aren’t as obvious as others — it would make it a lot easier.
3.
Earlier this week, Graham completed the interview portion of the Miss Maryland pageant. In an Instagram post, she said she’ll always remember why she’s doing this: to be a voice and advocate for others living with chronic and invisible illnesses:
Today, as I prepare for my interview, I remember why I am here. For the little boy dreading another chemotherapy treatment, the girl who is unable to travel more than 40 minutes from the hospital, the man who I told that is ignored by the doctors, the woman who is yelled at for using her handicap placard: I am here for you — to be your voice, your example, your reason to push on. I want to thank all of you for giving my this opportunity to speak on your behalf, using your words with my voice. I am here for you. I will make you proud.
4. Graham is no stranger to the frustrations many people with invisible illnesses experience in doctor’s appointments. She told Yahoo that she’s been written off because doctors didn’t understand how she could be in pain and still look “upbeat” – making the necessary point that patients shouldn’t be dismissed simply because they’re trying to have a positive attitude:
Before and even after my diagnosis, I have trouble communicating my pain in a way that medical professionals can understand and take seriously. Around age 12, one doctor dismissed my pain by saying, ‘Oh sweetie, if you were in that much pain we would be peeling you off the ceilings! But look at you, you’re smiling!’ And yes, I smile — and I will always smile because I am alive.
5.
Graham’s talent portion at pageants is a monologue she wrote that describes her experience with invisible illness. She performs it while wearing a hospital gown that reveals her scar and even has an IV pole onstage as a prop. During an appearance on Fox 5 DC, Graham explained that the monologue is meant to show that she’s proud of who she is, even when she’s not wearing a sparkly pageant gown:
I talk about my story and obstacles and tell people every person you meet has something they’re battling. [I wear] a hospital gown, IV pole, because that’s authentically who I am. That could be who I am the day before and that’s who I am the day after. But when I’m on that stage I want to show people that this is me and I don’t have to wear something sparkly, this is me. And I want to show them if I can do this, so can you.
6. Pageants include swimsuit, evening wear, and talent portions, and Graham doesn’t hide her spine-length scar in any of them. As she told the Washington Post, it’s all about making the invisible visible, to educate others as well as give fellow chronic illness warriors the confidence to reveal the beauty of their own bodies:
If I stand on stage in a bikini and people can see a 25-inch scar, maybe someone else will be a little bit braver, or have the courage to show their own scars.
7. As part of her advocacy work, Graham founded The Zebra Network, a foundation that raises awareness of rare, invisible illnesses through education, advocacy, and patient support. She told Yahoo that she’s given blankets, soap, chocolate and other donated items to patients who are having surgery:
My dream goal is to have a home to house and feed patients during their stay. We would have a rehabilitation for surgical patient to safely walk, and transportation services to take them to their appointments.
8.
Yes, Graham may be a beauty queen, but she still experiences the same pain and difficult moments that any chronic illness warrior goes through. In a video posted on her Facebook page, Graham urged people not to let those moments tear you down and to always keep fighting:
There were some tears because as you can imagine it was painful. In that moment I thought about you guys, and the fact that I can’t give up because I have other people to fight for. I made adjustments to my workout so that I would not be injuring my shoulders further but I could still make my body stronger. And as I tell you guys so often, you have two choices. You can choose to let these obstacles — that you often have no control over — you can choose to let them crush you, or you can choose to fight against them. And today I chose to fight.
Lead photo courtesy of Victoria Graham’s Instagram
Erin is the former senior editor and chronic illness editor of The Mighty. She joined The Mighty in 2015 and previously worked at Inside Weddings magazine, Mic, and The Huffington Post. She was also the features editor at The California Aggie, UC Davis' student newspaper. She is honored to be a part of the Mighty community!
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