Within a span of under twelve months, Pip Lewis transitioned from a state of physical fitness and wellness to experiencing such intense discomfort that she was unable to even grasp a cup of tea. The mother from Rotorua recounts a five-year struggle to obtain a diagnosis of Ehlers-Danlos Syndrome (EDS), a genetic disorder affecting connective tissues, resulting in daily pain. Despite seeking medical attention approximately fifty times, she was twice given incorrect diagnoses and repeatedly faced skepticism from healthcare professionals who couldn’t pinpoint the cause of her symptoms. While Te Whatu Ora expresses regret over patients enduring distressing delays in diagnosis, it asserts that prioritizing common conditions over less prevalent ones like EDS is standard practice. In 2018, a Herald investigation highlighted the challenges faced by four women in obtaining EDS diagnoses, with three of them—Georgie Ferris, Dr. Rachel Palmer, and Stephanie Aston—passing away the following year. Despite her diagnosis eleven years ago, Lewis, now residing in Rotorua with her husband and mother, graciously welcomes the Rotorua Daily Post into her home, adorned with her artwork. Despite her condition being incurable and debilitating, Lewis appears outwardly unaffected as she engages in conversation, cuddles her dogs, and paints. She recalls the onset of her symptoms in 2013, starting with fatigue and hip pain, while she was residing in Auckland and working as a Customs officer. Despite her previous athleticism, she noticed a decline in her physical abilities, struggling with recovery and experiencing increasing pain. Lewis vividly remembers the moment when the pain became unbearable, rendering her incapable of performing simple tasks like lifting a bedsheet or walking short distances. She attributes her condition to the laxity of connective tissues around her joints, causing her muscles to compensate excessively for joint support.