News & Events

Why I use art to cope with my rare disease

Last Reviewed 12/05/2017

By Shanali Perera

In early 2009, I was an active second year specialist trainee doctor in Rheumatology. I embarked on an unexpected journey that transformed me both personally and professionally by becoming a patient in my own speciality.  

I developed vasculitis (inflammation of the blood vessels), a long-term condition. This affects my hand function and mobility. I was also diagnosed with postural tachycardia syndrome (PoTs), an abnormality of the functioning of the autonomic (involuntary) nervous system. This was life-altering. Simply standing up and walking a few yards became a challenge. My daily routine took a 180 degree turn and suddenly I lost all that functional independence and freedom I had taken for granted. Everything revolved around coping. Adapting. Adjusting.

My whole life changed when I developed a chronic illness. After many failed attempts at returning to work, swapping from full-time to part-time training, and taking countless periods out of training altogether over four years, I finally had to accept ill health retirement. I am currently living in Manchester and a patient under the care of Rheumatology department at the Manchester Royal infirmary. I use digital applications for artwork to help cope with pain, illness experience, adjusting to life with vasculitis and communicating with health providers, family and friends. As a retired doctor and a patient using my personal insights, I like to highlight the potential benefits I have felt by facilitating self-expression through creativity. Through my artwork, I aim to reflect my personal experience to raise awareness around integrating creativity, healing and health. I am keen to tell others of my experiences as they may benefit from incorporating art or similar creative expressions into their own healing.

What led me to art

What challenged me the most was feeling that I had lost control - the illness dominating, overtaking and over-powering me. Being confronted with the fear that my illness would distort who I am; my identity and self-image.

Creating art has provided me with an escape route. It has helped me to redefine my self-identity, express and symbolise​e feelings about the illness, and focus on what I can do instead of what I can’t do. I can’t control my symptoms or the course of my condition. I can however, control what I create.

I use art as a tool for mindfulness, positive reinforcement and reflective thinking. It gives me the strength to cope. It has helped me to achieve a semblance of normality and enabled me to set more realistic goals around my limitations. From my experience, adapting to find ways around limitations plays a key role in rebuilding confidence and progressing forward.

“I challenge illness dominance by using digital art.”

Using digital software

People with certain conditions not only have to deal with the general disability of the chronic illness, but also the physical limitation of expressing what is in our minds. On repeated use, my hands become numb and painful along with pain radiating to my shoulders. Using digital software has enabled me to create art with minimal physical effort and alternate hands. I experience less pain and fatigue through this medium than when using a paintbrush on canvas or charcoal on paper. This new found freedom to explore myself through a world of colours gave rise to my present work.

“Despite some challenging physical & emotional circumstances, there's still beauty within unpleasant situations.”

What I'd like to highlight

I use art as a visual language to share my experiences with my family, friends and health team. For many, addressing physical element alone is not enough. Creating art can help patients to communicate the emotional, spiritual, and cultural impacts of living with a rare condition. There is evidence to support the use of creativity in reducing anxiety, depression and stress, which can, in some cases, improve health outcomes. Research into art in health promotion, prevention and illness management is continuing to grow worldwide.

The patient journey can be draining.

The rollercoaster ride of new symptoms, side effects from drugs, flare ups and mood swings continues.

Art has helped me immensely to face overwhelming periods during my journey.

"From my own experience, art adds colour & perspective when the skies are grey."

ABOUT SHANALI

Shanali is a digital artist and advocate for the use of creativity to cope with long-term physical conditions. Through her work, she aims to raise awareness about "creative empowerment", as well as generate an interest in this subject among patients, carers, health professionals and the general public. ​
To view more of Shanali's work, please visit her website: http://shanaliperera.wixsite.com/digitalart

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