We covered a lot of ground during our Facebook Live interview with Julian Van Horne last week. Julian is an EDS warrior and spoke about the power of self advocacy and pursuing your passion. He and Emily also discussed finding work that focuses on empowering people in the chronic illness community, navigating relationships with chronic illness, and Julian’s experience as an LGBTQ+ and chronic illness advocate.
“If I am helping one person, I am happy.”
If you missed the interview, don’t worry! Tune in to hear their full chat below.
Here are a few highlights from Julian and Emily’s conversation…
Finding support.
When he first started sharing his story publicly, Julian was nervous. “I first started speaking up on Instagram to connect with people and relate to people. At that time in my life, I felt really alone, and I didn’t know anyone else in my situation so I started telling my story. People started liking what I was saying and I started talking and growing and reaching out to new people.”
Before he knew it, Julian was part of a community that could empathize with his experience and support him in times of need.
“It helped me on my journey to accept myself and what I was going through. I felt empowered by that and that I could actually talk about it.”
This resonated with Emily. “I feel like going through chronic illness, whether you look like you are or present as someone who is going through challenges, people are always going to judge you,” Emily said. “People are always going to talk about you, and the more that you can say this is who I am, this is what I am going through, take it or leave it. I find that extremely empowering about your story.”
You are your best advocate.
Throughout the conversation, Julian shared insight into his life as an advocate, both for the chronic illness and the LGBTQ+ communities. While sharing some advice for people in both of these communities Julian said, “Keep going and keep doing what you are going to do, unless it is dangerous or abusive. You have to take the risk because it is your life and you are the only one that lives that life, it is not your parent’s life, it is not anyone else’s.”
“No one is going to do it except for you,” Emily agreed. You need to put on your pants and tie your own shoes and get up in the morning.” And every move, every victory, every moment of personal advocacy makes you stronger.
Thank you Julian for joining us this month on Facebook Live and for sharing your story. Stay tuned for more conversations from the Mighty Well community, coming soon.
Want to connect with our community? Join us in our group, Friends in the Fight and share your story!