Shanali – I am not the illness, I am a person first

Shanali Perera lives with vasculitis, a rare autoimmune condition. She is an artist, educator and writer, having retired from her first career as a rheumatologist.

I live with vasculitis, a rare autoimmune condition involving inflammation of the blood vessels. It can result in a range of symptoms, affecting a number of different organs including damage to the internal organs, and it can mimic other diseases. Connecting the dots of vasculitis can be difficult, as the presentation of symptoms can be varied and vague, which is where diagnostic challenges arise.

On average, it can take 4-5 years to receive an accurate diagnosis of rare disease¹ and the time spent waiting for a diagnosis is not only difficult physically, but also mentally. In my case, I was training as a rheumatologist when I first started to experience symptoms, so it was a very strange experience for me to personally be going through the journey of the condition I was specialising in.

Many people assumed my symptoms were caused by stress or that I was attention seeking, which I found very emotionally challenging. And so, it went on for quite some time until the Autumn of 2011, when I started to experience more visual symptoms, such as facial palsy, followed by multiple foot drops, wrist drops and double incontinence, over a period of 6 months. I was then treated for possible secondary vasculitis. It was difficult not only experiencing the physical journey of my illness, but also the uncertainty that came surrounding my career, which ultimately, I had to step away from in 2012.

It took years to get on top of my management. I had further wrist drops, chest pains and episode of coughing up blood, with the intermittent appearance of toe lesions. It was in 2014, after, moving to different region and new hospital, with ‘out of the box thinking’ my management was changed and I was finally treated for Vasculitis – It was quite the transformation, to get on different treatments years later and become stable.

After leaving my career, I experienced a real loss of identity, I felt like I’d lost control of the direction my life was going in. The switch I felt from physician to patient, made me feel like I wasn’t a person anymore. This led me to art, as I realised that while I couldn’t control what was happening with my condition, I could control what I create. My condition affected my hand function and mobility amongst other things, and I used a digital app to start drawing. The artistic experience allowed me to express and symbolize feelings about the illness. This resulted in a huge positive shift, helping me to focus on the things I can do, as opposed to fixating on what I couldn’t do.

My art has helped me gain control again and provided me with a clear sense of purpose. By putting a colour and shape to my pain in my art, it helped me create something tangible, which not only helped me deal with my condition, but also showed others what I was experiencing.

I think psychological support, from the time of symptom onset to diagnosis, is extremely important and is a shift I’d love to see in the community. I was in my early 30s when my journey began and the everyone around me supported me and gave me strength, but they weren’t experiencing the same thing as me. I think having a relatable and supportive network of people who understand what you’re going through is vital.

We don’t pay enough attention to the role of self-management when it comes to rare disease, as this is something that will stay with you for the rest of your life. When you leave the hospital, no one tells you what to do next, which leaves a lot of people feeling lost. 

I cannot emphasize enough the importance of self care. From my experience, adapting to find ways around limitations plays a central role in rebuilding confidence. Regaining a sense of control, a sense of purpose became a significant component that inspired forward movement with my life and work.

I hope moving forward the general public realise that just because someone lives with a rare disease, it doesn’t mean they stop being a person. I want people to see the person for who they are. I am not the illness – I am a person first.”

This is an edited version of Shanali’s story reproduced with kind permission from Shanali and Takeda’s #IamNumber17 campaign. Visit the campaign and see the story in full here.