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: ‘Melting’
Medium: Pencil and ink
What aspect of fatigue were you trying to capture in this specific piece of art?
I wanted to capture how waves of fatigue flow over me and make me shut down. I wanted to show how even rest is exhausting. Exhaustion, lack of sleep, daily fatigue, and depression all meld together — and I don’t know where one begins and the other one ends.
Can you describe what’s happening in this piece of art?
A non-gendered person is curled up on their legs and arms with their face looking at the spectator. We often see this pose with small children who are sleeping and are cute. I wanted a reference to the child-like need to care for ourselves and the push for comfort when we feel fatigue like this. I used to curl up like this as a child.
I created shadows in areas where I struggle when fatigue is high: the brain, lungs for breathing, feet for walking. Those areas are particularly difficult for me. I also wanted the person to be looking at the spectator because those of us with disabilities are expected to look away so as not make others feel uncomfortable. I want the onlooker to be uncomfortable. I want the onlooker to not be able to forget a person who is curled up in a position that should be comforting but ultimately is not.
How do you feel when you see this piece now?
I honestly feel proud of this piece. I love the patterns, the shadows, the blending and the fact that it does look like the person is melting. Patterns move me.
I also see the attempt to self soothe but the inability to do so. I see the struggle of exhaustion with no hope or recourse. I see myself getting lost in something over which I have no control. It is a proud moment, but also a hard moment when I look at this piece.
How do you hope other people (chronic illness patients or not) respond to this piece?
I hope that this speaks to a different type of fatigue: a more all-consuming fatigue that is unmerciful and unkind. Many of us struggle with fatigue at different levels. When I created this piece this is exactly what I felt like. I was losing myself. I was worried about keeping my job. I was lost in brain fog and breathing issues and losing the ability to walk. I was not on social media as much because I just did not have the energy. I felt like I was melting down under the sun and it was hard and scary.
What has creating this piece taught you about coping with fatigue?
Fatigue like this does not just show up. It does not just drop in for a visit. There are very real reasons for high levels of fatigue in my body. I learned that I should question and push harder for answers instead of just listening to the sadness and struggle swirling in my head, bringing me down and scaring me.