Your story journey with vitiligo is a powerful narrative, a testament of resilience, self- acceptance and the beauty of individuality and sharing your story with the community can be a beacon of hope for others also on similar journeys to yours. Writing and journaling has helped me considerably over the years and has allowed me to unravel conflicting thoughts and feelings since developing the condition when I was 3 years old.
The first piece I wrote was for Ditch the Label, a global youth charity for 12 – 25 year olds back in 2015. It was titled ‘Life with Vitiligo; my white skin cells started to attack’ and I recall feeling quite vulnerable as I wrote about the many years of torment I suffered as a result of my skin whilst knowing this wasn’t a story just for me, but for others to read. Despite this, my intention from writing the piece, was to be authentic and for those with a visible skin condition to be able to relate and recognise they weren’t alone in how they might be feeling.
Our journey and experience with vitiligo is something we share in common and many of us can relate to the daily challenges, the social anxiety and feeling isolated when you might be the only one in your family and friends circle with the condition. However, our personal story is unique and so sharing our personal narrative not only empowers us as individuals, but others on a similar journey. Let’s explore how crafting and sharing your vitiligo story can become a transformative tool and uplift those in the vitiligo community.
Reflection: Start your story by reflecting on your journey with vitiligo as openly as you can. Dig deep and think about how it’s made you feel emotionally, where you’ve experienced the most challenges and times when you may have felt good about your skin. Explore how your thinking patterns and perspectives have evolved over time and how your skin has shaped who you are today. Self-reflection is a powerful way to help you recognise how your skin has impacted your thoughts and behaviours which creates a strong storytelling experience.
Identify Key Themes: Identify the key themes in your vitiligo journey i.e. the moments that really stand out. For example, it could be when you discovered your first spot and how that made you feel or it could be navigating your school years, the time when we want to fit in with our peers the most or managing societal perceptions. On the flip side it could be those moments when you felt a little more empowered or supported which for some, could be discovering a community that understands you and allowed you to be part of something outside of family and friends. Focus on the aspects that resonate most with your journey toward self-acceptance.
Authenticity: Authenticity is key when writing your story. It’s what makes you come across as genuine and relatable. Share your thoughts and feelings in a raw and honest way that allows people to really connect with who you are. This will resonate with readers because it will make them feel less alone if they are struggling with isolation and they’ll also see the real person behind the words.
Don’t be afraid of being vulnerable: Sometimes, being vulnerable is difficult because often we associate it with being weak when this simply isn’t the case. Embrace those real moments when you felt uncertain or worried, for example not knowing if the vitiligo would spread which could make many of us feel fearful. Being open about your vulnerabilities creates the opportunity for others to connect to you and your story on a deeper level, fostering empathy and understanding.
Educating and Dispelling Myths: Use your story as an educational tool. Dispelling myths and providing accurate information about vitiligo contributes to a more informed society. Your story becomes a tool for breaking down stereotypes and fostering a culture of acceptance.
Encouraging Advocacy and Visibility: Your willingness to share your story encourages others to become advocates for vitiligo awareness. By increasing visbility, you collectively contribute to a world where individuals with vitiligo are seen, heard and celebrated for their unique beauty.