The Phrase That Has Haunted Me Since I Was Diagnosed With Rheumatoid Arthritis
“You’re so young to have this.”
That phrase has haunted me since I was diagnosed with juvenile rheumatoid arthritis (JRA) at the age of 18 years old. Over the course of my 12-year ordeal dealing with the ups and downs of RA, I’ve been told this by almost every doctor, physician assistant, nurse, family member, friend, and even strangers.
In the beginning, I was numb to it, mainly because I was still really deep in the “denial” phase of accepting the fact that I had an illness with no cure. I never knew how to reply to this statement or if a reply was even warranted. I either just stared back blankly, like a deer caught in headlights or just murmured the word, “Yeah.”
Before I was diagnosed, I was a healthy teenager who grew up playing sports. I wasn’t fully aware of how autoimmune diseases truly affected people, until I experienced it myself.
That all changed four years later, when in college for my undergrad, I got offered an internship as a public relations intern for the Arthritis Foundation in Chicago, Illinois. During my experience there, I was able to learn how it was to work for a nonprofit.
One thing that was a major turning point and learning curve for me was going to Springfield, Illinois to advocate. I met many people my age who were diagnosed with RA and other arthritis-related conditions as babies or young children. Hearing their experiences scared me, as that was my firsthand look into what my life could or would be like in the future. The unknown was scary, as it is with anything we aren’t familiar with. However, there was a level of comfort knowing that I wasn’t alone in the fight. Especially that I wasn’t the only young person fighting, and that gave me a push to not give up hope.
I wouldn’t say I wasn’t prepared at that time, but my worldview and condition wasn’t affecting me as much as it has these past few years. I’ve learned that when people say things that chronically ill people hear all the time, the best response is to just educate. There is a need for awareness, and those who experience this personally or indirectly can be a huge driving force to help make change.
When was your last flare?