Chiara's Story Living with Psoriasis
From Darkness to Light: A Masterpiece in Progress
At nine years old, I learned that a simple bicycle accident could change everything. What started as a scrape on my calf triggered my genetic predisposition to psoriatic disease, spreading like wildfire across my whole body. Suddenly, I wasn't just a kid with a skinned calf—I became someone who felt fundamentally different, unworthy, and ugly.
I spent my childhood and teenage years drowning in darkness and pain, both physical and emotional. The thick, scaly red patches covering my skin weren't just medical symptoms; they were constant reminders of my perceived inadequacy. Even when my friends accepted me for who I was, I couldn't accept myself. I felt ugly, worthless, and undeserving of love or friendship. The hardest part wasn't others rejecting me—it was rejecting myself. I remember being denied entry to fitting rooms in department stores due to misconceptions about contagion, which only reinforced my internal narrative that something was fundamentally wrong with me.
But here's what I discovered: privilege changes everything. My parents could afford monthly trips to Singapore for dermatologist consultations, expensive biologic treatments, and the education that helped me understand my condition. Most importantly, they created a stigma-free environment by educating the people around me tirelessly where I slowly learned that psoriasis was part of my story, not my entire identity.
This privilege came with responsibility– how can I extend these privileges that I have to others like me? In 2019, I founded Psoriasis Indonesia because I realized that most people living with Psoriasis in Indonesia face it alone, without proper information, adequate healthcare access, or community support. Today, we've built a community and platform of over 19,000 members who support each other through education, empowerment, and advocacy. Our community outreach programs have provided expert knowledge-sharing sessions and support groups across Indonesia, creating safe spaces where people find their voice and overcome stigma.
Just as Psoriasis Indonesia was gaining momentum, in 2021, I faced another challenge: transverse myelitis, an inflammatory condition affecting my spinal cord. I was completely paralyzed from the diaphragm down, facing the terrifying uncertainty of whether I would ever recover or walk again. This second autoimmune condition forced me to confront my mortality and resilience in ways I never imagined. It taught me that our bodies may betray us, but our spirits don't have to. Moving between countries—studying in Malaysia, later working in Estonia—while managing multiple chronic conditions also taught me about the complexities of navigating different healthcare systems while dealing with illness. Each country had different approaches, accessibility levels, and cultural attitudes toward chronic conditions, deepening my understanding of how geography and healthcare infrastructure compound the challenges patients face.
What started as a simple desire to help fellow patients has grown into something beautiful: a community where people learn to thrive with their conditions. We've discovered that when people living with skin conditions connect, magic happens. Shame transforms into strength. Isolation becomes community. Self-hatred turns into self-advocacy.
As an International Federation of Psoriasis Associations (IFPA) Global Ambassador since 2021, I've spoken at IFPA Forums, contributed research input to global studies, and helped organize World Health Assembly events. Psoriasis Indonesia has now joined international networks, amplifying our voice on global platforms while maintaining our grassroots community focus.
Today, I'm striving to continuously learn and broaden my knowledge and network in global health advocacy. As an international advocate with a data analytics background, I'm learning to better bridge the gap between patient voices and policy makers, combining lived experiences with evidence-based insights to ensure that healthcare decisions at the highest levels are both compassionate and data-driven.
Our skin conditions don't diminish us; they're part of what makes us extraordinary masterpieces.
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All my love,
Chiara Lionel Salim
Chronic Illness Advocate
Founder of Psoriasis Indonesia (instagram.com/psoriasis_id)
Instagram: instagram.com/chichilionel
LinkedIn: https://www.linkedin.com/in/chiaralionelsalim/