Art in dialogue: Visibility and Voice Beyond illness

Shanali Perera is a self-taught digital artist based in Manchester, and advocate for the use of creativity to cope with long-term conditions. She took up digital art following early retirement due to a rare illness that came on during her specialist training in Rheumatology.
Shanali shares her experience of becoming a patient in her own specialism and the impact digital art has on supporting her to take control and manage her condition. “I am using art to explore the presentation and representation of my illness and transform the lived experience into a meaningful way of living, moving from clinician to patient.”
Her work is centred on generating awareness about creative engagement and finding tools such as art to combat struggles rising from the illness experience. As well as generating interest on how expressions of the ‘lived experience’ can help health practitioners and the public gain new insights beyond patients’ illnesses.

 

My inner reality, Shanali Perera

For centuries, across civilizations creative expression has been used as part of healing rituals. Creative expression has irrefutable power. There is something about creativity, how we engage with it and share it with others, that has a positive impact our health. I am a self-taught digital artist based in Manchester, a former doctor and advocate for the use of creativity to cope with facing challenges from long-term conditions. I took up digital art following early retirement due to a rare illness, that ironically came on during my own specialist clinical training in Rheumatology. Becoming a patient under my own speciality has given me a unique insight into the everyday struggles patients go through. Through my personal experience of art and illness, I hope to share the essence of being a patient; the inner reality, the complex and fluid state of the lived experience, and the impact digital art has on supporting me to take control and manage my condition.

From Doctor to Patient

I live with vasculitis, a rare condition which affects hand function and mobility, amongst other things. I was also diagnosed with postural tachycardia syndrome (PoTs), part of an autonomic neuropathy. This was life altering. Simply standing up and walking a few yards became a challenge.

Becoming a patient under my own specialty was an insightful as well as a humbling experience, particularly highlighting the everyday struggles patients go through first hand. My patient journey was layered with many shades of grey. Dealing with multiple elements all at once – the physical, emotional, spiritual, stuff at work, dynamics with relationships and social life – was like having ten different screens opened on my laptop and not having a user guide. I felt powerless and was unable to control the direction my life was heading. The day I had to give up my profession and take early retirement, I felt robbed of all my dreams and expectations. Betrayed by my body. Unable to achieve or maintain any of the standards my pre-ill self had set for me. I felt left behind. Not able to keep up with my friends, colleagues and subjected to all sorts of social pressures. Mostly the illness dominance had completely distorted my image and identity. I lost myself, what I stood for and what I am about.

I started exploring the digital medium to create art while recovering and adjusting to ‘living with’ my illness. Using an app on my mobile phone to create digital art has had a transformative impact on my life. It helped me to regain control from the overpowering emotions and challenges that stemmed from a long-term condition. Using a digital application on my mobile has enabled me to create art with minimal physical effort and providing the ability to alternate hands. I experience less pain and fatigue through this medium than when using a paintbrush on canvas or charcoal on paper. For me, this form of artistic expression was a means of self-exploration to convey how I was feeling. I explore colour as a method of portraying different energies. My art reflects on my encounter integrating creativity with healing, documenting my observations in colour, shape and form. The artistic experience allowed me to express and symbolize feelings about the illness, as a whole person involvement. I could not control how the illness was evolving or my day. However, I could control what I created, which gave me a sense of achievement, a sense of purpose; , focusing on what I can do rather than what I cant. This was the turning point for me. To walk past the old expectations and redefine a newer version of me. This helped me to resist being defined by the illness that had taken over me at that point. From my experience, adapting to find ways around limitations plays a key role in rebuilding confidence.

Inner turmoil, Shanali Perera

Regaining a sense of control is a significant component in managing long-term conditions and moving forward with life and work. Learning new ways to take charge and exploring new tools to help with stress can certainly help one deal with situations better. Having a tool, for example art, gardening or cooking, on top of medications and other therapies makes it easier to cope with pain, fatigue and other the everyday battles. Art has helped me to re-define myself after illness dominance distorted my identity and image. Art is an outlet, a form of healing that helps to portray the subjective experience. Art has the capacity to engage the community and aid social transformation, a platform that can evoke change; to generate change in attitudes that can help build a culture truly representative of everyone. Having no formal art training, my art comes from within. My visual narrative aims to raise awareness, open dialogue and create agency about facilitating ‘expression of illness’ using art. Exploring art and the human factor, making the invisible visible, my expressions aims to communicate the bigger picture of misunderstood, understated or ignored emotional, socio-cultural, political and economic aspects influencing the lived experience with illness. Through my art, I would like to share how the ‘creative force’ empowered me. My concept is ‘Creative empowerment – exploring the healing power of art’ to engage with the community to see beyond illness/disability.

I now focus on raising awareness about creative engagement and finding tools such as art which, alongside other therapies, can help combat the challenges of illness experience. I also believe that artistic expressions of the experience of illness can help health practitioners and the public gain newer insights and better understanding around what the lived experience looks like.

I want to reach out to others in similar situations to share my experience, so they can find a suitable tool, if they haven’t already, to combat the on-going struggles with work, life, confidence and self-esteem. For people who have limitations in hand function, talking to them about the digital medium, might be especially helpful. Sharing through creative expression with others’ breaks the isolation and can also help them understand emotions and empathise with pain, illness or disabilities.

Art has helped me to find meaning in what I am going through, finding purpose in sharing this experience with others and being somewhat more able to cope with the lived experience is empowering. And it is certainly empowering to produce self-directed creations when majority of the time the illness is trying to disempower me. So, I would say the creative process is a tool as well as a for me. Art can be more than a form of expression; it is also a way of thinking, empowering people to better adapt to challenging situations.

 

Using art to engage ‘Moral imagination’ in clinical practice

A great deal of diagnostic power can be drawn from the visual world, opening tangential pathways of learning. Visual arts can help explore our understanding of the human aspect of medical practice. Through looking at art, we can enhance the capacity to recognise the moral dimensions of clinical experiences, to explore questions of empathy and ethics in healthcare provision, increase awareness of emotional reactions, and develop what’s known as “moral imagination”.

I would like to see more art used in dialogue, to help friends, family, public, health providers see the multiplicity, the fluid state, the ‘calm, storm and in-between’ of the lived experience. Creative expressions can provide a voice to reveal the lived experiences of illness in all their complexity. I believe art can help health practitioners to get a deeper understanding of what people go through and the impact illness can have on image, identity and self-worth.

New awareness or understanding about issues faced by their patients opens up communication channels, making room for difficult conversations. Seeing the patient as a person first. Seeing more of the face behind the illness, the person behind it all, not just a body with an illness. This provides an opportunity to see multiple alternative meanings that may affect health; a wider differential diagnosis; the problems of rushing to a premature conclusion.

I want people to see beyond the Illness, to transcend pain and disability with art. Art is infinite and unconditional. Our imagination is limitless. This allows us to create as well as appreciate the meaning, beauty and 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. It mirrors the way chronic pain, illnesses and health challenges are constantly changing shape, defining and re-defining themselves. Art can also facilitate discussions around cultural understanding and cultural determinants of health. The supportive evidence looking into art in health promotion, prevention and illness management is continuing to grow worldwide and rapidly gathering momentum. Indeed we can all use art to promote adaptive coping and self-management; to foster and harness abstract thought and inner reflection, expanding and deepening our perspectives.

“I face life

The storm

The calm

The In-between

Living each day

 

I see the person beyond the illness

Where the illness ends, I begin…

 

Do you see me?”

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