The Journey

This is a story about the author who has spent a lifetime searching for the answer to her chronic pain. Slowly and piece by piece she gathers apparently unrelated clues over a lifetime unaware of their association. Indeed the many professionals that she had been referred to over the years could not piece the clues together in any coherent fashion. However, a chance encounter with a fifth cousin provides the final missing piece of the puzzle. A gene for a particular disorder is traced back many generations and suddenly the picture is recognised for what it is.This book describes the often lonely and isolating journey that undiagnosed disease can often take you down. It describes how professionals can add to the suffering by their unwillingness to acknowledge any pain which had not yet been legitimised through a medical diagnosis. The author highlights that many chronic diseases can take many, many years to be identified for what they are and suggests ways of not only coping with connective tissue diseases such as EDS but how to deal with professionals who are unwilling or unable to acknowledge a - as yet- undiagnosed illness.The author supplies plenty of photographs showing the signs of her own journey which were captured on her tablet and which underline the diversity of signs and symptoms which are characteristic of connective tissue disease.