Becoming part of a chronic disease community

Contributed by: Ali
Published: Thursday, May 10, 2012
Reviewed by: Evelyn Corsini, MSW, February 2012

 

Ali has Systemic Juvenile Idiopathic Arthritis.  She is 22 years old and lives in New York City.

I was born and raised in South Florida and I went to college in Baltimore. I was a very athletic kid and pre-teen – in middle school I played on several sports teams. When my JIA limited my ability to participate in group sports, I shifted my interests elsewhere. I was on my high school and college debate team and I was the president of my college a cappella group.  More informally, I love animals and I’m a huge foodie.

I began experiencing symptoms of my disease at age 8. However, I was not diagnosed with Systemic Juvenile Idiopathic Arthritis until age 13. I suffered from intense pain in my joints and fatigue throughout high school. Sometimes, I was hospitalized for serious flare-ups with serious muscle weakness, joint pain, rashes, high fevers, and loss of lung capacity.

At first, my disease was a major source of embarrassment for me. I didn’t talk to my high school friends about it. While my high school administration knew I had a disease, because I looked and acted like a normal teenager, my teachers attributed my many absences to me “faking sick” to get out of class.  Mostly, I didn’t want my classmates to know that I had a “weird” disease.  I used spray tanner on my legs to cover my scars from prednisone use, or made up excuses to explain their existence.

When I got to college, I began to let go of some of my inhibitions. It was difficult to hide my injections in the fridge and bottles of pills in my desk when I had a roommate in an extremely tiny room. I had both my hips replaced sophomore year of college and my friends came to visit me in rehab. I felt so much better knowing that I could talk to my friends about my disease. I made better and more lasting friends who could truly understand all aspects of me.

There was no secret to telling my friends or boyfriends I had JIA – I just blurted it out.  Sometimes I would start with, “You might think this is really weird, but…”. In all cases, my friends responded with, “I don’t think you’re weird.”  Of course, they can never really understand the difficulties of having JIA.  However, after a while, they became knowledgeable about arthritis.   My friends know that I hate having to take prednisone when I’m having a flare.  When I have flares, they ask me what hurts, and try to cheer me up. In high school, I believed no one would ever love me because I was too “weird” and my cheeks and stomach were puffy from taking prednisone.  I had puffy cheeks when I met my boyfriend several years ago.  While he was happy when I finally stopped taking high doses of prednisone recently, he was also sad I no longer had chubby cheeks.  Now I realize that having JIA is part of who I am, and my boyfriend and friends understand that the disease has shaped my personality, my character, and my professional aspirations.

In college I majored in Public Health and worked part-time at the Arthritis Foundation. I wanted to work with kids with arthritis so they could feel like they had a person to talk to about their conditions. Now, I’m getting my Master’s Degree in Public Health so I can try to change the healthcare system to make it more accessible for disabled people. I’ve become a part of a chronic disease community – and I like that! Because of this increased openness, I know I don’t have to suffer my pain alone.