By Sarah Pasia
A few weeks ago, I had a phone conversation where I was asked if I know of anyone living with a chronic illness. I thought about it for a few seconds, checked people off in my head, and replied with a no. During that exchange, my brother came off of his mini-bus from school. I made the universal signal of “be quiet” to him as he walked up stairs. A few minutes later we were able to have the same verbatim chat as we do every day.
“Did you have a great day Sarah?”
“Yup, did you?”
“What’d you have for lunch today John?”
*Insert hot lunch of the day here*
“That sounds good!”
That weekend I accompanied my brother, John to his appointment in NYU Langone’s Laser and Skin Surgery Center of New York. While seated in the waiting room, I scrolled across a photo of my sister participating in this year’s Spartan Race. Our conversation over dinner one weekend popped in my head when she said, “I should write ‘MS Warrior’ across my stomach for the race.” One of my eyebrows lifted and a wave of realization came upon me. I remembered that the two people who I am closest to are living with a chronic illness.
I sat still for a moment and questioned why I hadn’t said anything when I was asked if I knew anyone with a chronic illness. I know that it wasn’t because I was ashamed of them; I love telling people about my brother and sister. In fact, I could spend all day talking about them. I ended up assuming that I didn’t mention them because I’ve really almost forgot. I have grown to see beyond their chronic illnesses. The waiting room that I was sitting in was just that. Another room in our routine of hospital visits for John. I grew up going to Yale New Haven Hospital and New York University Hospital just like my younger brother did, but in a different way.
Never in my life had I classified either of my siblings as a person with a “chronic illness.” Although my brother has a port wine stain on the left half of his face, I’ve grown to see past it. As for my sister, she looks strong and healthy, making others assume that she’s medically sound. When in fact, she was recently diagnosed with multiple sclerosis while my brother was born with glaucoma and Sturge Weber Syndrome. When I picture them, it’s not their illness that I see; I see them as John and Marie – just as they always were.
I believe that occurrence was a reminder for me to be more empathetic and understanding, not only with my siblings, but to others as well. It’s easy for us to get stuck in our own thoughts and actions where we can sometimes forget about the ailments that our loved ones face each day. As family member of two siblings who are chronically ill, I believe I should ask more often, “How are you actually doing?” Like, “How does your body feel?” “How is your heart, your soul?” Just because people look fine from a glance does not always mean that’s the case. It important to remember that not all chronic illnesses are visible, which is why we must treat each person with kindness. We never know what obstacles others must face on a day-to-day basis.