- Artist and vasculitis patient Dr. Shanali Perera on her journey of living with and managing vasculitis
For physician and artist Dr. Shanali Perera, being an artist comes from a place of passion and of pain. Qualifying in medicine in the Manipal-West Indies twinning programme, her postgraduate specialist training was in rheumatology in the United Kingdom (UK), specialising in the rare autoimmune illness vasculitis. In a twist of fate, Dr. Perera became a patient in her own specialty.
Due to vasculitis, Dr. Perera’s hands often cramp and ache with repeated use. She quit her medical career one year short of her consultant post in 2012. Art became her refuge. Having ventured first into digital art, Dr. Perera diversified into acrylics and built an impressive portfolio. She has been a speaker and activist on managing vasculitis while in England and recently published a book of her work with her story – Finding Me Beyond Illness. Working with tremors in her fingers in a field that fixates on details can be very challenging, although to Dr. Perera it is a reward, where she is made to feel human again.
The following are excerpts from the interview:
Becoming a patient in your own specialty is truly a twist of fate. What were the signs?
I first noticed lesions on my toes, which were red, black, and blue dots. In England, because of the cold weather, you sometimes get these things, so the lesions were easily ignored until the skin died. I had lesions and ulcerations, which saw me hotfoot it to a specialist. He diagnosed that it was skin vasculitis, which would go away.
Unfortunately, it didn’t go away. I began getting symptoms in my arms and in my legs, a heaviness of sorts. I couldn’t drive and I couldn’t examine or see patients because my hands would tire very quickly. However, even though I was telling people about this, there were no visible signs of the symptoms on my body. It took about two and a half years since its onset, until I was formally diagnosed with vasculitis.
I was an atypical patient who didn’t fit in any box. A lot of the time, people thought I was making things up, because all my tests were normal; that was very hard to go through. Vasculitis is a rare condition that mimics so many other conditions, which means that you don’t get just one thing, you get many things. In the end, if you don’t take notice of the dots which are really lesions, it takes about three to four years to get diagnosed.
What was it like to transition from medicine to art?
I felt as if I was on this fast train and it suddenly derailed. What happened? What took over my life? I wasn’t a person anymore, I became a thing, a condition, almost dehumanised. It was very challenging for me, emotionally, physically, and socially, because everything I knew had suddenly shifted. The shifting dynamic was very new and difficult to deal with. You can only imagine how humbling it was to become a patient in your own specialty.
Do you miss being a physician?
I remember the day that I had to give up my training number and walk away. It was in 2012, three years after my symptoms manifested. It felt like all my dreams had shattered; my identity was my career, so I didn’t know how to identify myself. I lost who I was. Vasculitis had robbed me of my career and my freedom in so many ways that I didn’t know how to comprehend or deal with what I had become.
It was a battle on a daily basis. I was on work mode as a clinician, but then I realised that I was actually a patient. I would forget that I was a patient. Even when I’d go to my consultant, I would be thinking like a doctor. But, on the other hand, sometimes, you just forget everything you know because of your vulnerability. I didn’t know how to deal with that vulnerability. I was helpless and looking towards others. It was like I was on the other side of the bed. After that initial battle, I would say that I don’t miss practising medicine or being in the wards, because I can cater to a much larger population and be of service to a greater community with what I do now. In that way, it’s more of a rewarding experience for me to think that I’m on a different path.
How did art become your refuge?
At the time I lost myself, I found my way back to being a person again through art. I couldn’t control my day and how my illness was evolving, but I could control what I created. This helped me find some purpose and get back some control in my life. I was visualising what I was going through. I would ask myself what pain looked like to me. It was an odd question. I personally cannot see my pain, but I drew my pain and put colour to it. It helped me understand, accept, and cope with my illness, and also helped me communicate about it. Art was my way of coming back to myself and moving forward with my life. My motto is “I’m not the illness; I’m a person first”. Art got me to a better place because it gave me a vehicle with which to explore what I was going through and make it more tangible. My mission in life is to make illness visible to others.
Your book, ‘Finding Me Beyond Illness’, how did that come about?
From 2014 onwards, I was using this application on my phone to doodle and create digital art. I had come to a point where I had about 2,000 pieces of art and my friends asked me to write about my journey. Someone very dear to me said: “Let’s write a book; put your art and your story together.” I thought that was a great idea, using a visual narrative to show my journey.
The book took four years to complete, with the Covid-19 pandemic helping greatly because I was at home and had time to focus on it. It took quite a while to put things together, but I had also been teaching at the time, and came up with a particular art concept which is about bridging the gap between a medicalised individual treating a long-term illness and an individual living with the long-term illness by showcasing the internal workings of the person in a visible medium.
What’s your favourite piece from those you’ve worked on?
It’s a hard question, but I think that it’s the cover of my book. It’s a becoming of me. In most of my earlier work, the figures’ postures are bent and not straight at the start, and then, with the progression of the book, the figures straighten out. The piece Onwards, which is depicted on the cover, is about taking control of my life and owning who I am and moving upwards.
What do people need to understand about vasculitis?
Many people probably haven’t heard about vasculitis, but they need to understand that vasculitis is a rare autoimmune condition, which means that your body is attacking itself. Small to large blood vessels are attacked and any organ can be affected. It can damage organs to an extent where it becomes life-threatening.
People also need to understand that vasculitis is invisible most of the time. Patients may look well, but symptoms like fatigue can be very debilitating. There are good and bad periods. People always tell me that I look so well, but they don’t realise that I might need two to three hours rest before an event and have to rest after I finish the event. Every day is a struggle as there are so many things that we have to deal with on a day to day basis. You might not be able to do breakfast, lunch, and dinner with people. Many things we take for granted in daily life are things that people with long-term autoimmune illnesses have to struggle through. These people are fatigued all the time and the toll it takes on someone is not visible.
It is a debilitating disease then?
Absolutely. I have a blue badge, which is for people with disability, but I don’t use a wheelchair. People ask me why I use the disabled bathroom since I don’t use a wheelchair. Some don’t realise that after some time I get fatigued, and so I have to conserve my energy. I don’t use stairs; I use the lift. Using my hands continuously for my acrylic paintings is an effort. I microwave my food to conserve the energy in my hands and channel that into my art. If I have to dry my hair for example, I keep the hair dryer on my bed and take my hair to it, as opposed to using my arms to hold the dryer to my hair. These are the little day-to-day things that we all need to manage and think ahead to make it easier on ourselves.
How has the experience of juggling the two roles of bringing awareness to vasculitis through your art and in the medical settings been for you?
It has been very challenging. It has been one of those things that I’m trying to advocate for, in the UK as well as in Sri Lanka. I want to promote the use of visual art in medical education, patient education, and also in clinical settings. We are making some progress, but it’s taking time for people to get used to that concept and idea. With little things like podcasts, workshops, and conference presentations, we’re hoping to raise awareness.
(The writer is the host, director, and co-producer of the weekly digital programme ‘Kaleidoscope with Savithri Rodrigo’ which can be viewed on YouTube, Facebook, Instagram, and LinkedIn. She has over three decades of experience in print, electronic, and social media)