Hi everyone,

I am a contemporary artist, educator, retired Rheumatologist, and a person living with Vasculitis, based in Manchester, UK. I am also a LENs(Lived Experience Network) champion for the Northwest region.

I am doing a walking challenge to fundraise for Vasculitis UK, to support my Vasculitis community. As well as raise awareness of Vasculitis, globally together with our extended family of Vasculitis communities around the world. The walk will take place on World Vasculitis Day, 15th May 2021.

Vasculitis UK is a charity run by volunteers, providing tremendous support to people living with Vasculitis. Their tireless efforts to raise the profile of Vasculitis, funding research, and improving the quality of the lived experience with Vasculitis need wider recognition and support. They have played a key role in my journey with Vasculitis.

The start of my illness was during my specialist training in Rheumatology. I felt derailed when my life rhythm got interrupted and became a patient in my own specialty of training. The shift of moving from a clinician to something in between and then to a patient was a challenging transition. That switch from WoW! I am not a person anymore, I am a patient, was equally difficult. 

The impact an illness can have on a person's life, image, identity, and self-worth can be life-changing. I was a fiercely independent and active person. I felt my life and my movement was robbed from me, and all that functional independence I so took for granted lost, by my limitations. The illness dominance took over my life, my image, and my identity. It distorted 'Who I was', 'What I am meant to be', and 'What I look like'.

It took years to get on top of my management and unfortunately in 2012, I had to give up my career. Art helped me to understand and accept what I was going through by giving my illness visibility. It gave me a sense of purpose and helped me regain some of that control I had lost.

It was quite the transformation, to get on different treatments, and finally become stable. Breaking free from the illness that trapped me for so long was so liberating! The freedom to finally ‘Own who I am now’, the essence of who I have become, what I look like, and what I am about, to be and move forward as Shanali.

Now my mantra is that I am not the illness. I am a person first. "Vasculitis is only part of me, an accessory I wear around me."

My walking challenge is about highlighting 'movement' in all forms. There has been movement throughout my journey with Vasculitis, whether it's physical, emotional, spiritual, social, or cultural. The inner movement of connecting with myself, the outer movement of connecting with others. The movement of how we connect with, perceive, and respond to pain, fatigue, change, and illness. The role reversal from being a doctor to being a patient to becoming an artist was guided by the movement of ‘learning to walk in the rain, adapting and adjusting around challenges.’ 

I hold the torch, that represents forward movement, the movement of switching from a person to being a patient becoming a person again, as I complete my walking challenge on the 15^th May 2021. 

My walking challenge symbolizes the movement of endurance, resilience, and empowerment seen throughout my illness journey and I take you all, everyone living with or caring for a person with vasculitis, with me on this walking journey.

"I am not the illness - I am a person first."

Join me in being part of this torch of collective power and change!

We hold the power to move. Let's move forward together individually, collectively, multidimensionally, and creatively to explore our full potential at living life. Let us drive change as a collective...

Are you with me?

Thanks for taking the time to visit my JustGiving page and read my story. Any donation you may be able to make is greatly appreciated.