Intensity and ferocity: Those are the two words that best describe the start of my chronic illness journey in 2011. I was diagnosed with moderate to severe rheumatoid arthritis at the end of September. A few months later, in January of 2012 came my fibromyalgia diagnosis. It’s only been eight years since this all started, but I cannot remember a time when everything did not hurt.
I have been diagnosed with something new every year since then including my gluten allergy, chronic anemia, hypothyroidism, Raynaud’s disease, heart issues, neuropathy, sensory processing disorder, and most recently, axial spondyloarthritis (AS) at the end of February in 2019.
My love of art began much earlier, when I sat in on a figure drawing class in school. The instructor allowed me to observe until the last 30 minutes of class when she shoved paper and charcoal into my hand and told me to draw “what you actually see and not what your mind thinks you see.” I was hooked and she was impressed. She helped me afford classes for the next several years so I could study figure drawing under her.
Art became my catharsis, my stress relief, and my source of help with the anxiety and depression I’ve had since I was a child. Over the years my personal art practice has waxed and waned depending on my ability to buy supplies and interference from life events.
But after my RA diagnosis in 2011 I began to create more regularly. I started with simple things around me then began working on ideas and concepts in my head.
I worked with an artist friend, who is now a concept artist for a major studio in Los Angeles, who was the first person to encourage me to post my work on social media. I got encouragement and support from posting my work right from the beginning, which in turn gave me courage to post more art on various social media accounts.
As my diseases progressed and multiplied, my art became more integral to expressing my experiences. As I struggled with intense pain episodes, fatigue so numbing I could not communicate, stress over keeping a job while trying to balance taking care of myself, relationship troubles, and more, I went from creating traditional art to creating pieces that expressed my experiences with my diseases. Despite being a very verbal person, I was experiencing moments that defied logic and defied any expression I could find.
If it sounds cliché, it’s for good reason. Art was, is, and will always be my outlet. Seeing the response from the chronic illness community — whether on my own Instagram account or on CreakyJoints, where I started sharing some of work earlier this year — has made me realize that when artists like me share the visual representation of the everyday struggles that patients face, it’s incredibly helpful. It’s helpful to us as creators; to patients who view and relate deeply to the pieces, and to our friends, family, and others who may not fully grasp what it means for us to live day to day with pain, fatigue, and countless other symptoms and manifestations of our illnesses.
So when fashion designer Michael Kuluva, who lives with rheumatoid arthritis and designs the innovative streetwear brand Tumbler and Tipsy, asked me if I’d consider sharing some of my artwork as part of his Spring/Summer 2020 fashion show in New York City this month, there was no other response except, well … YES.
Since Michael was diagnosed with RA a few years ago, he has always used his fashion brand and influence to raise awareness about the many challenges of managing a chronic disease like arthritis, especially as a young adult trying to launch a career and maintain friendships and relationships. His art and passion demonstrate that you can live your best life because of your disease, not just in spite of it. Including my art as part of his mission to share diverse patient voices and truths about living with arthritis is honestly a dream come true. It feels amazing to be validated and supported in this way.
Here is a sneak peek at the art I’m presenting and why I created it.
The Stories Behind My Art at the Tumbler & Tipsy Show
‘Break Free’
In December of 2018, my health took a turn for the worse because I developed bronchitis, which resulted in permanent asthma, was later diagnosed with AS and had to switch my biologic medication, all while living in an AirBnB because I had to move away from a roommate who was not the friend I believed she was. She was using me as her verbal whipping dog because of my vulnerability due to my health issues, a mentally and emotionally taxing situation that only exacerbated the many health problems I was facing.
I experienced intense fatigue, felt as if I were on no medication while I was waiting for my new biologic to kick in, and overall was consumed with my health in a way I had never been before. It was a very, very dark place.
After I moved away from my roommate and before I got sick, I created the piece called “Break Free.” I felt an upward mobility in my life. I had a job as a software developer, something I had dreamed of for years and was finally doing. I finally had financial independence finally and was able to get away from a bad living situation. I felt powerful and strong. This piece represents the resilience I have in my life to take care of myself in the face of someone who does not genuinely love or care for me. It is my resilience in the face of 24/7 pain and the courage I have to take care of myself despite the cost.
‘Buffering’
Next came the new AS diagnosis and the switch to my new biologic. This had an intense and deep effect on my health as I struggled with fatigue like I had never known. It was all consuming and overwhelming and did not allow me to think straight or function correctly. So I began creating a series of art pieces about fatigue. After I created my original three pieces I put out a call to other spoonies who struggled with fatigue asking for their description of fatigue in a word or short sentence, along with their age and diagnoses; I planned to illustrate the ones I could. The response was amazing and thrilling and the pieces all became a different face of fatigue.
Piece 9 of the Fatigue series is called “Buffering.” It represents the idea that your brain is spinning but you just cannot process what is being said to you and communication is dampened, if not broken between you and other people. It is like the Google spinner that shows when your website is buffering and is just not processing what you are trying to do. This idea was submitted by Laura, age 24, who has autoimmune syndrome and chronic fatigue syndrome.
‘Blur’
Piece 4 of the Fatigue series is called “Blur” because despite intense fatigue that knocks you out, the world just seems to continue past you and become a blur. You are both a part of it and separate from it at the same time. This idea was submitted by Sarah, age 27. She has fibromyalgia, chronic migraine, POTS, major depression, generalized anxiety and panic disorder, and PTSD from sexual assault.
‘Powering Down’
Piece 7 of the Fatigue series is one of my favorites. It is called “Powering Down.” It shows the idea that we all run on batteries, but those with chronic illnesses run on much less power. We are often working with the threat of just shutting down in the middle of what needs to get done. This idea was submitted by Jeanna, who has lupus.
Art helps me process my experiences as they are happening, helps me connect with others when I feel completely alone, and helps me create pieces that express what is happening when the limitation of words clamps down on me. It has become my therapy over the years and my lifeline to continue functioning in the face of so much uncertainty when it comes to my health. It helps refill my resilience and create courage for me when I have none. It truly is my lifeline.
Follow Jennifer’s artwork and musings on Instagram.
