My name is Lily, and I have had Juvenile Arthritis since I was a toddler.
For the past 18 years, I have watched the power of medicine– from rheumatology appointments to x-rays and MRIs, drug infusions to surgical procedures, or physical therapy to nonprofit philanthropies. I’ve watched it all happen around me, and it became my “normal”.
I joined the Communitas family a year ago, and have learned that healing stems not only from drugs and science, but also mindfulness and meditation. This program is incredibly impactful, and I am excited to see how it affects this current group of young adults and parents.
Many of us who participate in the Communitas program can relate to the feeling of hidden suffering. While we may be young and seemingly carefree, we are battling numerous chronic illnesses, and have learned to mask the pain.
For my first blog post, I have decided to focus on the topic of our daily lives, and how much we are impacted by our disabilities. Hopefully, this will not only help you feel less alone in your struggles, but it will also help others gain insight into the world of invisible illnesses.
Attached is a short poem I wrote to reflect my feelings of frustration. I encourage all of you to keep a journal and write down everything that is going on in your life…It can be incredibly healing.
Today, I woke up in a flare.
I lift my arms up over my head, slowly, anticipating even the smallest movement to cause a chain reaction of pain. Swinging my legs out from my cocoon of warmth, I feel my knees swell from the pressure of motion.
Today, I am in a flare.
Act normal. Say hello, walk in a straight line. Keep your gaze straightforward; the neck stiffness is making it difficult to look around. I feel my right hip joint buckle unnaturally, a dull ache that demands attention. Now limping, a young athlete hollers to move out of his path. I grant forgiveness for his rude attitude—my illness is invisible. He didn’t know better. He is entitled.
During work, I am in a flare.
Standing on my feet for hours. My back begins to heat up—I know it’s not happy with me. It begs me for a ten-minute break, which is an hour away. Act normal, smile at customers. Massage your shoulders at every opportunity. An elderly woman comments that rain is aggravating her rheumatism. I wink and strongly empathize. She gives me a cold look and proceeds to lecture me on the trials and tribulations of aging. Her advice: live while you’re young. I provide her with jasmine green tea and she exits. The day stretches on.
At the party, I am in a flare.
Social occasions. I promised my friend that I would be there; it would break her heart if I had to cancel…again. I look around for an escape route. As always, I am surrounded by happy, healthy people who have little to worry about. By now, all 360 joints in my body are swollen, tired, and ready to give up. Act normal, be friendly.
Tonight, I am in a flare.
I waddle home, carrying a ten-pound backpack. Gently, I untie my shoes and run a bath. I soak for hours, waiting for some relief that I know is far away, unattainable. I crawl back into bed, knowing I have to wake in six hours to repeat it all over again.
Tomorrow, I will wake up in a flare.
I wish you all well in the next coming weeks. It is the season for sneezing and head colds, so take care of yourselves.