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American Journal of Kidney Diseases

Art as Psychological Support in My Kidney Disease Journey

Published:September 21, 2022DOI:https://doi.org/10.1053/j.ajkd.2022.04.017
      I am a Swindon-based artist who mostly paints people and portraits. I center a lot of my work around body insecurity, mental health, and health issues, including chronic kidney disease (CKD).
      I was first diagnosed with CKD in 2003 after a random blood cholesterol test. They told me my kidneys were working at 30%. I didn’t understand what this meant. As a young person, I was fortunate not to have any symptoms throughout my illness. I lived a pretty normal life and socialized with my friends as someone my age would. I would see the consultant nephrologist twice a year and he would explain how the kidney function was reducing, but gratefully, I felt ok.
      On the 5th of November 2009, I got a phone call from the hospital saying that I needed to start preparing for dialysis. I felt sick to my stomach, extremely nervous, and started to experience anxiety about what was to come. But I needn’t have worried, as the staff put me at ease and told me it wouldn’t start for about a month.
      That December, I started dialysis sessions at my local hospital. I chose to do evenings as I was working as a freelance web designer at the time and worked in the day. Sessions were for four hours. I would use the time to watch films, read, or just get extra sleep. The staff were lovely and my fellow patients were friendly. It definitely helped to talk to others who were experiencing dialysis at the same time that I was.
      On the 28th of December 2010, I received multiple phone calls at two in the morning. I learned that I had a kidney donor and urgently needed to reach the hospital. I was in shock. We travelled to the hospital immediately, and within 12 hours, I had received a brand new kidney and was in recovery!
      Life after recovery was wonderful. Suddenly, I could do the things that most “normal people” could do. I completed my goals of running 5k and 10k charity runs, and I enjoyed holidays to Turkey and Greece without any issues. I got married in 2017 and took up kung fu in 2020, achieving a blue belt. The only thing I noticed that was different posttransplant was that I was more prone to colds due to my immunosuppressants. I tried my best to minimize this by looking after myself, eating well, and exercising.
      In June 2021, I started feeling out of breath any time I walked for more than five minutes. I was concerned that I had asthma, so I contacted my primary care physician. I had no signs of asthma; instead, I learned that I had become anemic. After 11 years, my kidney transplant was failing.
      Over the coming months, I began feeling weaker and weaker. I had to give up my kung fu sessions. For many months, I was in bed most of the time. My appetite reduced drastically. I told my nephrologist how I felt, and he referred me to the psychologist, who was already collaborating with my renal team. Only later did I find out that there is plenty of psychological support related to having kidney failure, but you have to request it. It is not generally offered.
      Speaking to the psychologist really helped me. I gained the perspective I needed to develop resilience to push through. The perspective I gained was to take it a day at a time, that I wasn’t always going to feel like this, and that when I started dialysis, I would begin to feel better. The psychologist also suggested I start doing little things each day that I enjoyed. I told her about how I’d like to start painting again. She suggested it would be a great way of expressing myself and that it could also be used as a therapeutic tool in my recovery.
      I was not well enough to paint yet, but I knew that as soon as I was, I’d paint something related to my experience with the continuum of living with CKD.
      During the first few weeks of 2022, I felt that I finally had the energy to paint a portrait. I wanted to show a personal, vulnerable side to my kidney disease journey. I used a photo that I took of myself during one of my first dialysis sessions in the hospital. It was an emotional time for many reasons. I felt scared, bewildered, exhausted, and sad but also relieved to be getting the treatment I needed to feel better over time.
      I’m hoping my artwork reveals a sensitive side as an artist, a vulnerable side. Being able to expose the tough times through my art will hopefully uplift others who are in a similar situation, or at least provoke some kind of emotional reaction that leads to positive action or reflection.
      I understand how much of a bewildering experience it is living with CKD, especially during the transition to dialysis.
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      Steven Light (aka SLART), Bloodlines, February 2022. Oil on canvas, 121.92 × 96.52 cm. Courtesy of the artist. Photograph ©2022 Steven Light.