Shanali's Story

My story

Creating digital art has had a transformative impact on my ability to manage living with a rare long-term illness. I developed Vasculitis (inflammation of the blood vessels), which 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.

I have used Art to cope with pain, my illness experience and adjust to living with a long-term condition. Through my artwork, I aim to reflect my personal experience to raise awareness around integrating creativity, healing with life altering situations.

I am based in Manchester, UK and currently a patient under the care of Rheumatology services at the Manchester Royal infirmary. The start of my illness was during my 2nd year of specialising in Rheumatology as a trainee doctor in Birmingham.

It was an illuminating experience both personally and professionally, when I become a patient in my own specialty. I had to give up my training post and take on ill-health retirement. Suddenly at cross roads, not knowing the direction my life was heading, facing several changes & dealing with multiple layers of emotions all at once, was an overwhelming experience.

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 symbolisee feelings about the illness.

Directing the 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.

“I challenge illness dominance by using digital art.”

Using digital software

People with certain disorders not only have to deal with the general disability of the chronic illness, but also the physical limitation of expressing the "art" that is in their mind. On repeated use my hands become numb and painful, pain radiating to my shoulders. I found the use of digital medium my adaptation as it enabled me to use light touch with minimal effort and alternate hands. Less pain and fatigue became apparent in my hands and arms compared to using a paintbrush on canvas or charcoal on paper. For me, this form of artistic expression was a means of selfexploration to convey how I was feeling. This newfound freedom to explore myself through the world of colours and inner creative space, 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 people to communicate the emotional, spiritual, and cultural impacts of living with life-limiting conditions or situations. Visual expression also helps others understand emotions and the underestimated burdens associated with long-term pain, illness or disabilities.

Art can be more than a form of expression; it is also a way of thinking. It can be an outlet that portrays the subjective physical or emotional experience. This can in turn develop self-reliance, coping strategies social engagement, cultural inclusion. Sharing through creative expression with others’ breaks the isolation and improves social interaction.

Empowering people to better adapt to challenging situations. Adapting to find ways around limitations plays a key role in rebuilding confidence and progressing forward. Art has helped me immensely to face overwhelming periods during my journey.

“ Art adds colour & perspective when the skies are grey.”

What l Hope to achieve through my Art

“Seeing beyond illness/disability and other health challenges” - The power of social engagement, cultural inclusion & mutual respect

I want to start a conversation on how the ‘creative force’ empowered me. How it helped me to regain control from over powering emotions and challenges that stemmed from a rare long-term illness. How Art can influence, inspire and enable change. I am keen to tell others of my experiences as they may benefit from incorporating art or similar creative expressions into their own healing.

Art is infinite and unconditional. Our imagination is limitless. This allows us to create as well as appreciate the meaning, beauty & abstraction of the arts. After losing myself to the illness, my first step towards reinventing my identity was the creative process. Creativity can be used to explore and represent one’s individual journey –The way chronic pain, illnesses and health challenges are constantly changing shape, defining and re-defining itself. Given the opportunity, people facing pain, chronic illness, disability and other health challenges can freely express themselves without physical, social or attitudinal barriers. Therefore by engaging in the arts, they can:

- connect & contribute to their communities.

- challenge existing stereotypes & stigmas regarding illness/disability

- help build a culture truly representative of all people

Using my personal insights to suggest ways of integrating creativity & healing, I am focusing on generating a wider interest in the role of art as a tool, its potential therapeutic benefits & use as a non-medical approach to self-management in people with long-term conditions/health challenges; involving patients, carers, health professionals & the public.

Arts have the potential to assist in promoting health & healing to help the increasing demands on health resources.

I hope that Art can be considered as a therapeutic intervention given the impact creative expression & output can have on self-management, supporting wellbeing.

Over the last year, I got the opportunity to do a few workshops with patient support groups, students and carers both in the UK and Sri Lanka exploring the idea of ‘Art, a catalyst for healing?’ A conversation with others in similar situations as well as with health/allied health professionals, have highlighted the positive impact creativity imparts.

So, why not put this into wider use in the context of self-management of chronic illnesses & disability? Why not challenge the dominance caused by illness or disability?

LET’S TAKE A CLOSER LOOK AT OUR CREATIVE SPACE.

“ See yourself through Art. Be inspired. Be visible. Be heard.”

www.changinglanes.me

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