Sometimes, I feel like I’m living two lives. To many, I am just a young, thirty-something arts administrator who loves to bake, travel and practice yoga. As far as they are concerned, I am also perfectly healthy. In this life, I go to work from nine to five, enjoy walking around my new neighborhood discovering little shops and cafes, and pop up to New York City frequently to spend time with friends and catch up on the latest in contemporary dance.
To others, I am a young, thirty-something blogger/writer documenting the daily challenges of navigating life with a chronic disease and advocating for greater awareness of this thing called rheumatoid arthritis. In this life, a team of specialist doctors is only a speed dial away. Under the cover of night (and weekends), I sit hunched at my desk writing about my broken immune system and responding to emails from people around the planet, most of whom I’ve never met, in an effort to rail against the injustices and evils of a crappy, chronic disease. I practice yoga in this life, too, but the motivation behind my practice is more about rebellion and self-preservation than general fitness or even the pursuit of enlightenment.
When I first began blogging about RA, I purposely kept my identity undercover, preferring to keep the RA version of my life untraceable to my ‘real’ life. I also kept my blog, and oftentimes my RA, under wraps in my professional life, preferring to let only my closest friends and colleagues know about either or both of them.
But little by little, these two lives began to blend and blur. As I became more and more involved in creating awareness about RA, it became necessary to put my face to my name. And as I began to feel more comfortable, for lack of a better word, with the fact that I had a chronic disease, I began telling more and more people about what I was up to in my off hours.
That is, until I moved to a new city and a new job. I chose not to disclose anything about my health at my new job because, frankly, I didn’t see why they needed to know. Since my meds are managing my RA fairly well, I’m able to ‘pass’ as a ‘normal’ person and not have the tag of RA visibly clipped to my tailcoat all the time. I also wanted the chance to prove that I can do a topnotch job in my new position without worrying if what they knew about my health might impact what they saw. But let’s face it – part of me also wanted to take advantage of this chance to reclaim a fantasy life in which I get to be completely ‘normal’ again and pretend that there isn’t this other life of mine to contend with.
I remember when I was first diagnosed with RA, I went through a major period of adjustment in regards to my identity and how I thought of myself. Finding out that you have an incurable disease will change your life and how you see yourself. Suddenly, words like ‘sick’ apply to you and carry a weighted meaning they never did before. Simple acts like brushing your hair, getting dressed and turning a doorknob represent massive victories achieved through massive pain. Everything in your life takes on a second meaning, and you take on a second education and a second job managing the business of being sick. It’s exhausting and disturbing.