Having a chronic illness as a young adult can feel like an isolating experience. Your healthy peers don’t understand, and the medical world feels designed for older people. Then one day, you stumble across others just like you online. You’ve found your tribe. But these online support communities weren’t always there, a few brave pioneers paved the way for these safe spaces to take flight.
In this episode, we meet Stefanie Grant and Jenny McGibbon, digital creators and advocates, who started sharing their health journeys online in their early 20s. For both Stefanie, who has facial pain disorders and fibromyalgia, and Jenny, who has ME and Short Bowel Syndrome, their blogs began as a personal outlet during a time they felt alone in their health battles. As their journeys have evolved, so have their blogs, becoming online social media communities that are thousands of members strong.
Together the two discuss their responsibilities as leaders within the CI community space, the delicate balance that exists between positivity and authenticity and how they attempt to hold space for others, recognizing that everyone has a different lived experience and voice.