Living with the Unseen: A Young Woman's Journey with Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome: A Day in the Life Millions worldwide live with Ehlers-Danlos syndrome (EDS), a group of inherited disorders affecting connective tissues. A recent TikTok video by Unseen & Believed (@unseenandbelieved) highlights the often-misunderstood realities of this condition. Filmed in the US, the video shows a young woman applying makeup while sharing her experiences. "I'm usually actually pretending to be healthy in order to go hang out with people," she explains, illustrating the challenges of managing unpredictable symptoms. These symptoms, she says, "change literally every single day," ranging from mild discomfort to debilitating pain and migraines. The video emphasizes the variability of EDS. "Not everybody with EDS experiences it in the same way," she notes, highlighting the differences between her own experience and her mother's. This underscores the importance of individualized understanding and support for those with EDS. The video concludes with a call for empathy and awareness. "All TikTok has done is raise awareness for EDS," she says, emphasizing that the condition existed long before its increased visibility on social media. Her message is a powerful reminder of the human stories behind medical conditions often simplified or misunderstood.