Nikki Singh
"Who am I now?" It's a question many young adults ask as they navigate life's transitions. But for those diagnosed with an autoimmune disease, it can take on an entirely new meaning.
For Nikki, that question became the foundation of her doctoral research. Now in the final stages of her PhD in Population Health at Waipapa Taumata Rau, University of Auckland, she is exploring how autoimmune diseases shape identity and why understanding the person behind the diagnosisis just as important as understanding the disease itself.
"My research explores the link between identity and illness," Nikki says. "Rather than focusing on the medical aspects of autoimmune disease, I'm interested in the lived experience and how illness reshapes a young person's sense of self."
Diagnosed with an autoimmune disease in her early twenties, Nikki found herself navigating not only a lifelong condition but also questions about identity and the future.
"A lot of the academic research for autoimmune diseases is heavily medical, focused on understanding the disease itself, but the person behind the experience gets left behind."
That realisation inspired her to explore the experiences of other young adults living with autoimmune diseases in Aotearoa.
I've been so grateful that my research participants have trusted me with their stories. They have not let their illness become their only story. They are so much more than just a diagnosis. They are aspirations, hopes, dreams and longings.
Now, well into her PhD, she's hearing stories that are both inspiring and eye-opening. One of the biggest surprises has been the overwhelming response from participants.
"In qualitative research, it can sometimes be difficult to recruit participants, but within the first two months I had around 60 expressions of interest. That really showed me the willingness, and the need, for these stories to be heard."
Her research has also challenged the idea that autoimmune diseases are simply "invisible illnesses".
"The physical and mental impact of living with autoimmune disease is so much more than that label suggests."
Nikki hopes her findings will encourage more person-centred healthcare and greater understanding of the lived experience of chronic illness.
"The findings could help young people feel better understood, validated and supported throughout their illness journey."
Currently analysing her data and writing the final chapters of her thesis, Nikki will soon incorporate body mapping – an innovative arts-based research method – into her study.
“I’m very excited to try out this innovative method, as potentially one of the first research projects worldwide to combine body mapping and autoimmune disease research.”
Her research has already earned national and international recognition. Alongside winning the FMHS Three Minute Thesis (3MT) heat, she has also been awarded the Fulbright New Zealand Science and Innovation Graduate Award, which will see her travel to Stanford University to complete part of her doctoral research.
After graduating, she hopes to continue working in academia and public health.
"My PhD is not just the product of my own work, but the accumulation of all the people who have loved and supported me – my faith, parents, supervisors, friends and community."