‘Art enables me to face my body and my life with courage.’
Chronic 24/7 pain, fatigue, swelling, and a host of other symptoms are all part of my journey with rheumatoid arthritis, axial spondyloarthritis, osteoarthritis, fibromyalgia, and other chronic conditions I’ve been living with for years. I’ve loved drawing since I was a child, and after my RA diagnosis in 2011, I started to create art more regularly. As my diseases progressed and multiplied, my art became more integral to expressing my experiences.
Over this past year, I’ve been fortunate to start sharing my artwork on a much bigger platform than my own social media pages. Chronicwoman started publishing my art regularly — and the supportive, empathetic, and eye-opening responses I’ve been receiving from the chronic illness community have gone beyond my wildest expectations. I gave a keynote address about how my arthritis impacts my art at the annual meeting of the National Organization of Rheumatology Managers (NORM) and presented my artwork at the Spring/Summer 2020 New York Fashion Week show of designer Michael Kuluva, who also lives with rheumatoid arthritis.
I’m particularly proud of developing an abstract about how my artwork helps me cope with arthritis for the 2019 American College of Rheumatology/Association of Rheumatology Professionals (ACR/ARP) Annual Meeting in Atlanta. It’s part of the Patient Perspectives Poster Session, which invites patients like me to address “adaptations developed with their health care team that have improved their health.” I gave a lot of thought to the specific ways that creating artwork that visually conveys patients’ experiences of arthritis symptoms has helped me and others cope with our diseases.
Here’s what I realized — and shared in my ACR abstract:
Art helps me to listen to my body, enabling a more flexible reaction to pain episodes or flares.
Listening to my body in the first place got me diagnosed and got me the medical help that I needed. My health and body took an upturn when I learned to not fight the cycles of flares, pain, and disease. Listening to my body for cues allowed me to function more because I rested or pushed when needed. I learned my patterns and strengths, allowing me to accomplish more when I have energy without overdoing it.
2. Visual art enables me to express my journey while reaching out to others.
I am an expressive person and found myself discussing my diseases a lot due to the need for accommodation or support. But symptoms like constant exhaustion, lack of sleep, high pain levels, RA flares, and bouts of back pain left me without the capacity to use words.
When I began to publish these pieces on social media, the overwhelming response reminded me that I’m not alone on this journey and that my body is telling the truth.
I’m able to process my grief over lost abilities, deteriorating health, and describe my experience and journey with inflammatory arthritis in a more universal way, without words.
3. My art allows me to show my life and struggles in a way that makes abled folks stop and take notice.
Visual representation helps other patients point to a piece that validates their pain and creates better connections between people.
4. People with inflammatory arthritis need to know that what they are experiencing is normal.
My art helps me and others cope better because we see visually what is happening invisibly to our bodies. It validates our experiences and lets us know we are not alone in what is happening to us.
It gives me the ability to look back on a piece of artwork and remember the pain and my resilience and power in the face of intense circumstances.
It fulfills my need to be creative but also my need to take control of my life and body in a way that makes sense, allowing me to accept where I am.
It gives me the chance to process what is happening so I don’t fight the disease process. Art enables me to face my body and my life with courage and hope.
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