I have Ankylosing Spondylitis. That is extremely difficult to say and proclaim to the world. I have spent the better part of the last ten years hiding this part of who I am. I don’t think I’m alone or unlike so many people dealing with any of these similar inflammatory autoimmune diseases (Rheumatoid Arthritis, Psoriatic Arthritis, Juvenile RA, and AS to name a few.) Before my diagnosis especially, all of my energy went into either finding an answer for the pain or doing what I could to get by.
My life became fight or flight and I didn’t have the energy or ability to do either! So, I survived by wearing a suit of camouflage and took on the stance of hunker down and hope no one noticed that I had stopped going to parties or hiking or skiing. Shoot, I cringed at the idea of becoming vertical let alone going to sit on rock hard bleachers for a game or figure out how to stand at a cocktail party (heels – hah!) The idea of making small talk when the pain medication I needed to be there made me either fuzzy or overly bubbly. I thought I had found a somewhat plausible story to tell people as to why I stopped working and the fun, crazy Jenna was just someone I outgrew. Sounds legit – get married and become boring… I became sooooo boring.
I think that the stigma is a big part of why others may hide also. Chronic pain is viewed like a modern day leprosy (my sincere apologies to anyone suffering with leprosy or Hansen’s disease – talk about a misunderstood illness and social stigma!) And that’s just it – there is a social stigma that will only diminish as more people discuss and share their lives and experiences. People who have a spotlight to actually speak firsthand about these illnesses have built their whole lives around a Hollywood façade – who’d want to hire them to be glamorous and adventurous in the movies if they actually told the story of their daily lives? I’m taking off the Camo and maybe little by little in conjunction with all the bloggers out there, like Kelly at RA Warrior who asked people to blog today about this topic, we can slowly one step at a time make a difference.
Day 54 was created with pen & ink with watercolor.