After seven years of training in hospital medicine, it was during Shanali Perera’s specialist training rotation in Rheumatology that she encountered the first symptoms of Vasculitis, a long-term illness causing great pain and limiting movement. She got in touch with us to share how she used our Sketch app on her Xperia device to cope with the limitations and changes caused by her condition.
I am currently a patient under the care of Rheumatology at the Manchester Royal infirmary, UK. Prior to ill health retirement, I was a Rheumatology specialist trainee doctor and this has indeed been a transformative experience both personally and professionally. In 2009, I embarked on an unexpected journey by becoming a patient in my own specialty. Diseases are a black and white reality to health providers as the focus falls mainly on diagnosis, classification and management. For the patient though, the experience of illness is a reality with many shades of grey.
Chronic diseases can turn lives upside down, gradually changing the landscape of daily living. It overtakes life and often gives rise to chronic stress and depression. A sense of powerlessness, low self-esteem and self-identity can gradually set in. Art can be a refuge for coping with the dynamic shifts in daily routine – accepting role limitations, altering perceptions and regaining a level of control. Creativity gives something to take control of and lets people construct a positive identity for themselves. From my experience, adapting to find ways around limitations plays a key role in rebuilding confidence and progressing forward.
Vasculitis causes my hands to become numb, dead and painful whenever they’re used for any length of time. I found the use of a digital medium 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, artistic expression was a means of self-exploration to convey how I was feeling. This really helped me to keep the fun side alive and regain a degree of control. This newfound freedom to explore myself through the world of colours and creative expression gave rise to my present work.
My aim is to utilise my work to spur interest in the therapeutic benefits of creating. I want to share the positive impact that this form of self-expression can have on a person with functional limitations due to Rheumatic/Musculoskeletal conditions affecting joints and muscles. Exploring creativity to cope with daily challenges can be a constructive as well as an enjoyable pursuit given the plethora of life altering changes brought on by these conditions.
For me, art was a tool for positive reinforcement and reflective thinking. I managed to achieve a semblance of normality by starting to set more realistic goals and standards around my limitations. There’s a lot of scope to promote and develop the role of art in long-term illness, its potential therapeutic benefits and the use of digital apps in the non-pharmaceutical approaches to self-management.
We find ourselves in the digital age where technology is empowering patients to better engage with self-management of their long-term conditions. Digital healthcare is continually changing the world at an ever-increasing pace.