Her hands are small and knobbed;
They cannot form complete fists, or grasp to write.
Over the years, they have taken on a twisted shape of their own.
Her feet are shortened and round where the joints are fused.
She's endured harsh medications and multiple surgeries;
Damage control where no cure could be offered.
She has adapted and adjusted.
She is sensitive yet strong,
or at least she is trying to be;
Compassionate, she knows pain and challenges we don't share.
She feels alone in her limitations sometimes.
She is different; she is struggling; she is missing out.
And she is afraid it will keep getting harder.
She tries her best to accommodate disfigurements, infections, and chronic pain.
She's still holding on. But I can tell–her grip is weakening.
We all carry things with us.
Yet for her, this very task is a challenge.
She is clinging, trying to hold it all together.
This drawing of a patient's hand is my interpretation of her response to severe and disfiguring inflammatory arthritis. Her disease has caused her pain, changed her appearance, kept her from doing things she enjoys, and made it harder for her to connect with family and friends.
I drew her hand formed in the fist that is difficult for her to make because I wanted to capture her determination as well as her frustration toward the struggles she shared with me. In clinic, I was struck by the fears and emotional cost of dealing and coping with her arthritis, and how her disease reaches far beyond physical symptoms.
I also wanted to capture and acknowledge the resilience and strength that she does not always recognize in herself. Some patients may view aspects of their disease as a fight, or even as a loss. Hearing her perception of her illness and its effect on her life helped me to better understand and support her healthcare needs.
Resilience is something that I see and admire in my patients every day. It is something that illness can limit or cause them to doubt.
As providers, we seek to be able to tell patients what diagnosis they have, what it may do to them, and what it has already done. But we can't tell them what it means to them.
They have to tell us.
And if we are willing to listen, they teach us not just about medicine but also about ourselves.Copyright © 2019 American Academy of Physician Assistants