Sharing your story can be a powerful way to connect with others. We spoke to eczema & TSW patient advocate Linette Roungchun about how opening up about her skin allowed her to build the community she needed online.
We admire the way that Linette talks about her skin with honesty, candor, and a deep sense of humor. She uses her platform to host conversations, meetups, and online talent shows that provide a space for the eczema and TSW communities to connect and express themselves.
You’re remarkably open in telling your story online. You’ve also created supportive spaces for the eczema and TSW communities to express themselves. Tell us what inspired you to do that. How does that work build community?
Wonderful things come from necessity—and sometimes you have to build them yourself. The reason I started telling my story and creating community online is that I didn’t really have that in real life. There’s a quote: “be the person that you needed when you were a child.” I was brought up in a strict Asian Christian household. When it comes to Asian families and disability, especially visible disability, there’s a lot of shame. It’s very hidden. Growing up, I didn’t always get the support I needed from my family. And I didn’t see representation of Asian people—especially with skin conditions.
I know how important representation is and that’s why I speak up. I want people to see themselves in me. Another reason that I’m open and honest is that I want people to know what TSW looks like and feels like—that it’s a real thing. This is my reality. This is what I have to deal with. And I’m not ashamed.
What resources do you recommend for people who are looking for more community support on their eczema journeys?
I think going online is a great place to start. So many of us hide because of our skin, but we’re very active online. Instagram’s where I’ve chosen to tell my story, but TikTok and Facebook also have active eczema and TSW communities. Find people who like you, think like you, and vibe with you. Connect with them and follow their stories. Pretty soon you’ll build a community together. You can take that community offline and into the real world by organizing an in-person meet-up in your local area.
Another great way to find community support is through patient advocacy organizations like the National Eczema Association and ITSAN. Every year NEA hosts Eczema Expo, a patient conference where you can connect and learn from other eczema warriors, caregivers, and healthcare providers. My first Expo in 2019 was life-changing. To be at an event where you are respected and seen and heard—it was just so beautiful. I’ve been attending Expo ever since, and I plan to keep attending every single year!