Identity and RA
It is 3:37 PM on 4 July 2019. I am sitting in Greenville Memorial Hospital in South Carolina, sitting with my mother who has recently experienced multiple medical traumas. The next day, 5 July, is a Humira injection day for me, and in order to complete the injection, I had to carry my pen with me in its travel case while I drove from Florida to Greenville.
A nurse walks into the room to check on my mom. She glances over and inquires about my travel case. When I tell her I have RA, she expresses her sympathy and asks how it has affected my life thus far, especially for someone who is so young. The usual comments proceed: I cannot do most of the things I used to be able to do; I’m more fatigued than ever; while my joints are feeling better, they still occasionally hurt; it’s been truly life-changing. After soaking up these comments, the nurse then utters this phrase: “Your disease does not define you.”
Does RA impact personal identity?
I have sat here thinking about that statement for a long time. I’ve thought about it for so long because no one has ever told me this phrase before, even though I have said it to others. There was something that perturbed me in receiving that comment.
Most of my life is different because of RA
The central contention that I feel is this: my RA does define who I am but only to a certain extent; it is not a totalizing marker of my identity. But when I type that out, it doesn’t make sense to me. Many of my previous articles have centered around this notion that my perception of the world is fundamentally different now because of my diagnosis. And, to be perfectly transparent, my RA defines, limits, and delineates what I can feasibly do throughout the day. The personal world that I exist in today is profoundly different than my personal pre-diagnosis world; most of my life is absolutely different now.
Does RA define me?
But there’s an underlying question plaguing this rumination: What parts of my life are different because of my RA? I don’t want to simply just say “everything,” no matter how true that statement is. But of those aspects that are different, which are included in that word of “define”?
RA molds the world around me
For instance, RA profoundly affects my work life. I cannot work as much as I used to and must prioritize my body and how it feels. RA affects my social life, my personal life, how I interact with people, and what I can and cannot say. The main question then becomes: do those differences necessarily define my existence? I venture to say no; rather, they shape and mold my experience of the world around me.
I'm not sure of the answer
Thinking about this question sincerely causes me to reflect on the fluid and changing nature of this existence, that having RA compounds certainty and replaces it with a constant of uncertainty. Be it a new pain, a new medication, a new test result, RA as a disease is unpredictable. And that unpredictability ultimately confirms that I cannot accurately assess whether my disease defines who I am.
When was your last flare?