Jennifer Walker, of San Antonio, Texas, lives with rheumatoid arthritis, osteoarthritis, fibromyalgia, and axial spondyloarthritis. She’s a computer software engineer by day, but her passion is her art — a medium through which she can uniquely convey what it’s like to physically and emotionally cope with chronic pain.
We asked Jennifer, who is also a Patient Governor adviser to our ArthritisPower research registry, to share some of her most poignant pieces in a series we’re publishing called Arthritis Through Art.
The piece below is part of a project Jennifer is doing on fatigue in chronic illness, after a series of health mishaps led her to experience debilitating fatigue earlier this year.
Name of piece: ‘Spots’
Medium: Digital art
What aspect of fatigue were you trying to capture in this specific piece of art?
I created “Spots” because these areas of my body are always in pain — no matter what. It is only every a matter of how much and which part hurts the worst.
I could not show the whole body so I have other places as well that are not represented, but I chose this angle because these are the areas that often hurt the most: my spine, hips, shoulders, always my neck and the base of my head.
This constant pain causes fatigue. So not only do my diseases cause fatigue, but being in pain causes fatigue. Pain has been a major player for me over the years. I would say it is the number-one factor in terms of fatigue for me.
Can you describe what’s happening in this piece of art?
I chose a position of lying down because fatigue makes me spend a lot of time in bed. Naps are a huge part of my existence. When my disease activity is high that is all I want to do — and all I can do sometimes. There is no pillow or bed or any source of comfort in this piece because those things become pointless when the pain and fatigue are high. I lie down but even that will hurt. I sleep but I feel no rest. The pain is always on, so the fatigue is always on.
The figure portrayed is inspired by Charis Hill, a friend of mine who has ankylosing spondylitis (a type of arthritis that is related to axial spondyloarthritis). Charis, who is an important AS advocate, was my muse throughout this whole process. I used photos of Charis’s body and chose poses to express the pieces I was working.
How do you feel when you see this piece now?
I nod my head and say yes to myself. This piece is so representative of how pain and fatigue are intertwined for me. It is a conversation we never have with our doctors. If we do, it is short and often brushed over.
- We don’t get told that if we push through the pain it will make us more tired.
- We don’t get told that once the pain lessens we are exhausted and have to recover just from that intense session of pain.
- We don’t get told how much fatigue and pain take away small comforts from us, like sitting in chairs, lying in bed, sitting in a coffee shop with a friend.
- We don’t get told how we have to make space and time to recover from doing everyday tasks because of how the fatigue rules our bodies.
I say yes because this is the real conversation about pain and fatigue that I want to have, but do not get to have.
How do you hope other people — chronic illness patients or not — respond to this piece?
I want different reactions from different people. I hope this makes those who do not have pain and fatigue to take a moment and think about what it would feel like. I want the red spots to jump off the page and make the pain a focal point, so they start asking questions of those who are chronically ill around them for better understanding.
I want those with chronic illnesses to be comforted and know they are not alone. Their voices and pain and fatigue are important. And that they are stronger than they realize because they live with this amount of pain and fatigue in their bodies but still survive and function and love and laugh and live.
What has creating this piece taught you about coping with fatigue?
This piece made me realize how big a factor fatigue has been in my body since the beginning of my rheumatoid arthritis diagnosis. It has also reminded me that listening to my body is most important. That is a skill I have been honing for years. Listening to my body’s signals. Stopping when I need to stop. Resting when I need to rest.
And it reminds me that it is all part of my disease process: not to be fought against but embraced so that I can work better around it on a daily basis.
See more of Jen’s artwork here:
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