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From Storytelling to Storybaking: How I Adapted to Life with Ankylosing Spondylitis

Jumaini Ariff, a professional storyteller, was diagnosed with Ankylosing Spondylitis (AS) in 2021. She experienced chronic back pain and swelling of the lower limbs, which affected her career, parenthood, friendships, and family relationships. Jumaini learned to put her body's needs first when making decisions and found solace in her faith. She diversified her business, started, and continued online performances and workshops.

My name is Jumaini Ariff and I'm a professional storyteller that goes by the stage name; Nek Selampit, children's book author, and Malay Language Ambassador appointed by the Malay Language Council. I'm also a wife and a mother to two beautiful children. However, my life changed in 2021 when I was diagnosed with Ankylosing Spondylitis, a chronic inflammatory arthritis that primarily affects the spine and sacroiliac joints.

Before my diagnosis, I had a busy schedule travelling all over Singapore and overseas to perform and conduct storytelling workshops. However, the chronic back pain and swelling in my lower limbs, especially the sacroiliac joints, made it impossible for me to sustain long periods of standing, sitting, or walking. It was a difficult adjustment for me, as I'm a very active person who loves engaging in physical activities with my children.

My diagnosis affected every aspect of my life, including my career, my relationships with friends and family, and my role as a parent. I had to turn down job offers and faced depression for over a year. As a very public figure, I didn't know how to share my struggles with others, and I felt embarrassed about the 'new' me. I also became withdrawn from my friends, as I didn't know how to proceed after my diagnosis. I was worried about looking weak and frail, and my initial refusal to reach out for help was mistaken as being stubborn and arrogant by my family members.

However, through my faith, I found the silver lining behind my diagnosis. I realized that I needed to be more respectful of my body and make it a determining factor in my decision-making, especially for physically demanding matters. I learned that it was okay to take a step back, regroup, and re-strategize. I also found inspiration from a friend who was diagnosed with motor neurone disease (MND), and I mustered the courage to visit him. He taught me how to embrace my situation and continue to contribute to society.

Despite the challenges that my diagnosis has brought, my family has been my greatest source of support, along with my faith in God. I'm also grateful for the support of my husband and siblings, who have helped me to revamp my edutainment business, Storyscribblers. With their blessings, we diversified and formed, which combines storytelling and baking. We plan to hold workshops for parents and children to enjoy story-bake sessions with me and my facilitators in the future. For now, we're focusing on growing the brand by churning out festive bakes, while I pursue a WSQ certification in baking and pastry.

Living with an autoimmune condition has taught me never to take my abilities for granted. I've learned that my past does not define who I need to be now, and I can unlearn, relearn, and evolve. Most importantly, I've gained a heightened sense of empathy toward others who are physically challenged. I hope that my story can serve as an inspiration to others who are going through a similar experience.

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