A woman who was forced to quit her medical career because of scary and debilitating symptoms is now raising awareness around rare illnesses.
Shenali Perera first started to notice something was wrong while she was training to be a rheumatologist, but it was incredibly difficult to connect the different things that were happening to her.
‘On average, it can take four-five years to receive an accurate diagnosis of a rare disease, and the time spent waiting for a diagnosis is not only difficult physically, but also mentally,’ Shanali tells Metro.co.uk.
‘The hardest part for me was the mental component of people not believing what I was trying to say. Many people assumed my symptoms were caused by stress or that I was attention seeking, which I found very emotionally challenging.
‘I too, started to question myself. I would ask myself, “am I imagining all of this?”
‘If there is something going on, why isn’t anyone listening to me or believing in what I am saying? That to me, was more distressing than my physical symptoms. I felt my integrity being questioned and my word meant nothing.’
The 46-year-old from Manchester lives 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 – and it can mimic other diseases. This means there are often diagnostic challenges as the presentation of symptoms can be varied and vague.
‘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 six months,’ says Shenali.
‘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.
‘This was a pivotal moment in my vasculitis journey, as at the time I had still not received a full diagnosis.
‘I was training as a rheumatologist when I first started to experience symptoms, so it was very strange for me to personally be going through the journey of the condition I was specialising in. I was treating patients with vasculitis and seeing their everyday struggles. And suddenly I was living it.’
It took years to get on top of the management of Shenali’s pain and symptoms. She had further wrist drops – a condition where the wrist and fingers cannot extend fully – chest pains and episodes of coughing up blood, with the intermittent appearance of toe lesions.
‘It was only in 2014, after moving to a different region and a 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 her career because of her illness, Shenali says she experienced a serious loss of identity.
‘I felt like I had lost control of the direction my life was going in,’ she tells Metro.co.uk.
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‘The shift in dynamics involved moving from a clinician to something in between, and then to a patient. It proved to be a difficult and challenging transition. 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.’
Shenali has created a new piece of artwork that depicts the journey of what it is like to live with a rare disease from a healthcare professional perspective.
One in 17 people in the UK will be affected by a rare disease as some point in their lives. For those affected by rare disease, getting the right diagnosis is one of the most significant challenges. Shenali hopes her work will shed some light on this pervasive problem.
‘My condition affected my hand function and mobility amongst other things, and I used a digital app to start drawing,’ says Shenali.
‘The artistic experience allowed me to express and symbolise feelings about the illness. Drawing what my pain looked like helped me to understand what was going on, how it affected me, how I perceived my pain and how it impacted my lifestyle.
‘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.’
Shenali says her art has helped her gain control and provided her 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,’ she adds.
‘To use art to find meaning to what I am going through, find purpose in sharing this experience with others and being able to somewhat cope with the lived experience is empowering. It certainly is empowering to have self-directed creations when majority of the time the illness is trying to disempower me.’
In light of the lengthy and challenging diagnosis journeys that many people with rare illnesses face, Shenali is passionate that psychological support needs to play in big part in patients’ treatment.
‘From the time of symptom onset to diagnosis, this kind of support is extremely important, and it is a shift I would love to see in the community,’ she says.
‘I was in my early 30s when my journey began, and 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. Everyone with vasculitis will have a different experience, but we are all on a similar journey.’
Equally, she says ‘self-management’ and self-care are vitally important for anyone living with a rare disease.
‘When you leave the hospital, no one tells you what to do next, which leaves a lot of people feeling lost,’ she says. ‘Introducing things that people can do on top of drugs and therapy, which act as an outlet for people with rare disease, is so important.
‘I cannot emphasise 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. Accepting change reframed my lived experience.’
Shanali is one of the HCP Ambassadors for the I am number 17 campaign, helping to raise awareness of the many challenges the rare disease community face.
Ultimately, she wants there to be greater compassion, patience and understanding for people who live with rare illness and disabilities.
‘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.’
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