“Please take my seat!”
“I’ll get the door!”
“Don’t stress. Take your time!”
These were the pleasantries that surrounded me the day I walked on crutches. In the midst of planning a full-scale campaign to raise awareness and funds for the American Autoimmune Related Diseases Association (AARDA), something rather ironic happened. I became a visibly disabled person for a day…an experience that ultimately fueled my passion to continue advocating for patients battling autoimmune diseases.
For the past six years, I have lived life with two chronic and (for the most part) invisible illnesses – Crohn’s Disease and Psoriatic Arthritis. At the height of my battle with these diseases, I was so inflamed that I gained 20 pounds in one week and could barely move from total body joint pain…but no one could SEE that.
Aspects of my daily routine that were formerly second nature suddenly turned into frustrating experiences. The piercing glares of the drivers who didn’t understand why I was an “able bodied” 20 something crossing the street at a snail’s pace or the disgusted train passengers who couldn’t fathom why I wouldn’t give up my seat for an elderly woman.
But the day I walked on crutches, the piercing glares transformed into sympathetic glances and seats on public transit magically opened up the moment I hobbled onto the train.
People understood. They cared. They empathized.
I have rarely seen this empathy for patients battling invisible illnesses…even though I would characterize my psoriatic arthritis as infinitely more crippling than the day I walked on crutches. My arthritis was total body, so any move I made caused excruciating pain and resulted in the need for constant support not only to help me walk, but to perform simple tasks such as getting dressed. I was on crutches due to a piece of wood that got lodged in my foot but that didn’t even come close to the pain I experienced from my arthritis.
Here’s the conundrum…I can’t blame society for not understanding what they do not know or cannot see. But I am determined to help them learn. I achieve this step by step, through sharing my patient journey with anyone and everyone who will listen.
The night of the fundraiser for AARDA, I shared my story. I also talked about the day I walked on crutches.
As I shared this experience, I watched the expressions of the audience transform into people who understood…people who empathized.
So I continue to share my story, I advocate for the invisible illness warriors who are unable to advocate for themselves. I hope you’ll keep sharing your story too, because it is through our experiences that we will create a world of people who understand what it means to be an invisible warrior.