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LS Zine Giving Voice to Patients Around the World

LS Zine Giving Voice to Patients Around the World

By Gina

At this year’s (W)holistic Healing Summit, the Lichen Sclerosus Support Network released its first LS Zine! The zine gives voice to LS patients through art, poetry, interviews, and storytelling. It’s a creative, intimate look at Lichen Sclerosus through the eyes of people who live with it every day.

I am honored to be one of the individuals featured in the LS Zine. Contributing two poems and being interviewed by a member of the project team reminded me of the importance of art and storytelling as a part of healing.

The Importance of Sharing Our LS Stories

Since being diagnosed in 2020 with Lichen Sclerosus, I’ve struggled with being able to put my experience into words. 

Because LS isn’t widely known, I’ve spent a lot of time researching it and explaining it. I’ve read medical articles, listened to webinars, and tracked symptoms. I’ve shared the information I’ve learned with fellow LS warriors and have shared some of my situation with family and close friends.

But I hadn’t really shared my story. Contributing to the LS Zine helped me practice self-care by exploring and expressing my experience.

With poetry, I can keep my words brief and focus on just one aspect of my experience without feeling overwhelmed. With storytelling, I can walk through my LS journey at a slow pace that helps me recognize my growth and resilience. 

But art isn’t just about the creator. It’s also about the reader, viewer, or listener. The art and words that make up the LS Zine are invitations. These invitations are opportunities to step into someone else’s experience, even if for a brief moment. Of course, this isn’t the same as living with LS, but if a listener or viewer is engaged, it can lead to a whole new level of understanding. 

Creating Safe Spaces for LS Patients

When people with Lichen Sclerosus share their stories, powerful things can happen. They raise awareness, build community and find support in connection. But for many LS patients, it’s hard to find a safe or comfortable outlet to share their stories. 

When you open up about having LS, it can feel like you are divulging the most intimate parts of yourself. Creating safe spaces for LS patients to share their experiences is so important.

When a member of the LS Zine project reached out to me about an interview, I was a little nervous. What would the interview be like? Would I be able to tell my story? Who would hear these intimate details about my experience? 

But it didn’t take long for me to see that this project was a safe space. It gave me the freedom to open myself up and speak from the heart.

Four Essentials Elements Created in the LS Zine For Safe Sharing

If you’re looking for a safe space to share your LS story, or you’re looking to be a safe space where others can share their story, here’s what’s needed:

  • Consent: The person who interviewed me for the LS Zine asked for my consent not just once but all along the storytelling process. She asked me how I’d like to be identified. She told me how my story and words would be used. I fully understood what I was agreeing to.
  • Ownership: The goal of the LS Zine interviews was to hold space for people to tell their LS stories the way they wanted to tell them. I knew what questions would be asked, and the interviewer gently guided the conversation. Owning your own story is so important. It opens the door to healing when you have control over how you share your experience. 
  • Compassion: Lichen Sclerosus is a personal (and sometimes secret) condition. It’s hard to talk about. Having a compassionate ear makes it so much easier to open up in an authentic way. It creates a space where hardship can be shared, and LS patients can feel less alone.

When I was done with my interview, I was surprised by the sense of healing I felt. Having the space to own my story, tell it in my own words, and contribute to a community project made me feel like what I have to share is important. My LS experience matters.

A person with brown skin sitting in a red and white horizonal strip shirt in a cafe looking at the camera. Sharing her story in the LS Zine helped Gina heal.

Highlights from the LS Zine

Contributing to the LS Zine was a beautiful and powerful experience. And seeing the LS Zine when it was completed was just as amazing. I saw my own experiences reflected in each contribution.

Art by @StudioCornelius demonstrates the contradictory experience of having a “lonely secret” while finding “luminous strength.” Robina Wason’s “Dorsally Recumbent” takes me back to the doctor’s exam room, while Liz Lundberg’s “I’ll try anything” mirrors my daily symptom and treatment tracking. And then there is Kelly B’s flower, which calls me back to self-love and self-care.

Amidst the art are snippets of interviews with LS warriors — raw glimpses of life with LS. Each segment ends with a link to the full audio interview, bringing voice to these bittersweet stories.

One of the things I love most about the LS Zine is seeing the diversity in how people express themselves. We all have LS, but each of us is affected differently. Each of us has our own unique story to tell.

By weaving together creative, expressive, and honest pieces, the LS Zine reminds warriors that we, too, are works of art. 

Get Your Free Copy of the LS Zine!

Delve into the stories of LS warriors from around the world with LSSN’s free LS Zine. You’ll learn about the physical realities of having LS, how it affects relationships, examples of strength and resilience, and resources for those who would like to learn more about the condition.

Virtual Meetup Information

If you'd like to share your voice in person (virtually), join our next virtual meetup.

We meet every other Saturday from 2–4 PM and 7–9 PM Eastern Standard Time. Take this opportunity to share your diagnosis story, what is and isn’t working for you, and ask a question to the group.

Share your experience and heal. I have met many incredibly strong LS warriors through these meetups, and I would love for you to join our community. 

Sign up HERE for notifications and updates. I cannot wait to meet you!

2 Comments

  • Robina Wason

    Thank you, Gina, for expressing the gratitude and excitement I too felt when the Zine appeared. The project was managed with flair and skill and the resonances of shared experiences were deeply felt. I too feel that poetry enables us to encapsulate moments of our healing journey with great clarity. The power of expression is within us all; may we continue to listen to each other with compassion and committment.

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