I still remember my first time. I showed up curious, yet expecting to be bored. After doing cancer walks and fundraisers for everyone else, this was just another event for people with some horrible condition. I didn’t really take it seriously – after all, arthritis was for old people, not me. This walk felt like something else to fill up space on my calendar. I could be doing…something else.
It was May 18th, 2013, and I was standing in front of the California State Capitol building at 8:30am. A month earlier I had been diagnosed with Ankylosing Spondylitis. It was “California-HOT.” People were gathered around without much energy – people I didn’t know, until a few friends showed up and held me upright while I wondered for the last time what I was actually doing there. I still didn’t want to accept I actually had arthritis.
I had raised over $2,000 for this walk. Raising the money was a way to share my story after the shock of hearing the words, “You have ankylosing spondylitis.”
It wasn’t about the money. It was about screaming at the top of my lungs to be heard after my world fell apart. It was about what I could control. While I couldn’t control this new diagnosis, I could make sure everyone in my life knew about it.
It wasn’t about the money. It was about people seeing my world fall apart, and I wanted my friends to glue me back together and erase the scars.
On the browning grass outside the Capitol Building I stood waiting for something exciting but I was doing everything I could to see everything about this picture that was wrong: mostly that I was here for my own damn disease. Then, Eric, the Executive Director of the local chapter of the Arthritis Foundation took my hand and led me around, introducing me to people I didn’t want to meet because I didn’t want to accept that this was my life now. But because I had raised that much money, I was someone who needed to be known. My story had captured the attention of the Arthritis Foundation.
I had had years of training and experience sharing other people’s stories for them: breast cancer walks, disability employment rights, etc. But nothing could have prepared me for being with people sharing my own story. I didn’t expect the shock of it all. I expected to show up strong and able. This would be just another event. It didn’t matter the money I’d raised, it didn’t matter who showed up; it would just be some small nonprofit walk, something people would forget about tomorrow. I wouldn’t fit in.
But I did. And it tore me apart. I will never forget the feeling of finally releasing the facade because the people there could see right through to the pain I tried to hide. They could see how fragile I was underneath the strength I attempted to display.
I began crying during the presentations before the walk began. I realized I was among people who understood. I was in a safe space. These people were here to support me. Oh, my God, I have arthritis. I’m 26. That kid, he has arthritis too. That woman, she’s had arthritis her whole life. The guy next to me, he must have some kind of arthritis. That guy over there is with his wife in a wheelchair, she must have RA. They get it. I’m one of them. This is my life now.
I didn’t expect the tears to hurt as they poured out, from the suddenness of it all, and from the delay caused by the small openings of my eyes that wouldn’t let them all out fast enough. Snot ran out of my nose, tears streamed steadily down my cheeks and down my neck into the collar of my t-shirt. As I stood there listening to the honorees share their stories, blinders were put on. I entered tunnel vision. I was in a bubble. I was suddenly the only one there, all attention on the stories being shared. I was wrenched apart by the pain of it all and the unity of it all. I felt at home and I felt afraid and I wanted to leave but I couldn’t leave. I realized, both painfully and with hope, that I was no longer walking for someone else anymore – I was walking for me. And so was everyone else.
I overwhelmingly felt the need to be on that stage telling everyone about ankylosing spondylitis. I desperately wanted everyone to hear my story. I wanted the whole world to know my story.
After the walk, I had to be involved every way I could to make my voice heard. I wanted a cure, damnit. I jumped in with everything I had.
I began a support group for people living with Spondyloarthritis because I needed one myself. I received a scholarship to attend the National Advocacy Summit in Washington, D.C. I testified in the California State Senate about SB 1052 (it was signed into law). I also did make it on that stage, as I had hoped, for the Jingle Bell Run. I was featured in a national Associated Press news article about health insurance discrimination. My story was featured in Momentum Magazine, Meredith Magazine, in local newspapers and on several online blogs. I was awarded the 2014 Progress in Policy Award for the Arthritis Foundation Pacific Region. Things sped along into the next year and the next with additional opportunities to speak out and share my story. I decided to start my own blog so I could speak about what I felt called to cover. I was invited to share my personal story with a drug company and I also attended the American College of Rheumatology Annual Meeting. I use every soapbox I’m offered to preach about ankylosing spondylitis, including when I model, when I ride my bike, and when people say I’m “too young to have arthritis” or I “don’t look sick.”
I advocate because it gives me a sense of control over what I really can’t control. I see it this way: I can sit on my recliner (I mean my #sexychair) daily and watch life happen to me, or I can take a stand and make sure people know what AS is and that there isn’t enough money to fund research to find better treatments and a cure. Wanting to become an AS poster child was a crazy idea, but it has given me a sense of control and a reason not to give up. If I can change lives for others in the future, then my life will have been worth the pain I endure daily.
If you lived in this much pain, you’d need a reason to keep your mind off of it too.
So join me – hold my hands and walk with me so I can show you how good it feels to have friends who keep me from being alone on this journey where everything feels like a fight. Help me know I’m not fighting alone. Walk with me on your own time, in your own way. Walk with me every day.