For 60 seconds I will be famous. On the runway, the catwalk – whatever surface my heels will be wobbling on as I make my legs appear longer than they are and my heart less frantic than it will be. Few in the crowd of celebrities, photographers, stylists, and designers will know my name, but for 60 long seconds I will be the one everyone is looking at. It doesn’t matter to them who I am, and that’s ok. I’m there to sell clothes.
But I’ll be selling something else, too. I’ll be selling dreams and awareness for those living with incurable chronic diseases.
For the five hours before I take the first bold step on that
plank runway I will be backstage interacting with dozens of people – models, makeup artists, hairstylists, designers, stylists, photographers, and producers. Many of these people will see me as another model who wants to make it big in fashion. I’ll be another face to paint, another head to sculpt, another frame to drape and dress. I don’t blame them. That’s why most models walk in big fashion shows – to make it big. But I’m not in this to be America’s Next Top Model.
I’m in this to share my story. I’m in this to bring fashion and sickness together in a powerful way that changes people’s perceptions and awareness of invisible illnesses.
Backstage while I’m getting hair and makeup done, there is plenty of time for conversation.
N – So, how long have you been modeling? What shows have you done? Where have you been published? Who have you worked with?
Me – I’ve been modeling for a few years. I fell into it, actually, and came to enjoy the escape it provides. It has become a platform to share my story about living with chronic disease. Much of my portfolio has been used in news stories, magazines, and on my blog and other online story platforms in order to create awareness for Ankylosing Spondylitis. So, in the traditional sense of modeling and fashion, I haven’t been published often, but where my image resides influences the world far greater than if I was in this purely to build a portfolio of images. I sell my story more than I sell clothes. When you Google my name almost all the images of me are accompanied by my story, which I see as a win-win. People can’t help but click on an article or blog post titled, “Why Sick People Neglect Their Healthcare,” when the image with it is of an attractive model. The two don’t seem to fit together, and that’s exactly why I intentionally use the two together as a platform to share my story as well as my image. I like that I am kind of tricking people into reading my story, yet the image they see truly is me. It feels sneaky, but it’s really just a revolutionary way of reminding people that people don’t have to look sick to be sick. If you want my image, you get the whole package.
After sharing essentially these words, I have witnessed many people become emotional. They realize they aren’t doing my hair or makeup for one 60-second stroll down a runway; they are doing it to help change people’s lives – people who feel invisible because of diseases no one knows about. They realize my reason for modeling is not purely aesthetic, but rather empowering and world-changing. Suddenly, I feel my hair is being done more carefully, my makeup applied a little bit more perfectly, because these people behind the scenes realize that the pictures of me this evening, along with my story, will be shared much wider than the fashion community for a cause that is – excuse my cliche – more than skin-deep.
I’m famous every day. Because every day that I share my story, someone else knows what chronic disease looks and sounds like. Every day that I share my story, someone else realizes that disability and pain can look healthy. Every day that I share my story, it helps us all a little bit. And that’s the kind of celebrity I want to be.
You can be famous, too.