As I wrote in my first blog entry, my book is a work of fiction. The main character is not as sick as my daughter. I didn’t want to overwhelm readers with too many symptoms and conditions, so I gave Drea only two syndromes, which still provided enough symptoms to portray the experiences of a chronically ill young woman.
Although the doctors, lab technician, and phlebotomists in my book are fictional, their comments and actions are all based on things that have been said and done to my daughter during her appointments over the years. Many doctors should be ashamed of themselves! After reading my book, a reviewer for Kirkus Reviews wrote, “… the epiphanies that [the psychologist’s] patients have are often heavy-handed.” I purposely wrote them that way because if a doctor reads my book I want the best case scenario of a doctor’s appointment to stand out as a better choice than the typically bad behavior patients receive.
If you’re a healthy person who has read my book, you may never have experienced a bad doctor’s appointment. You may never have felt the need to defend yourself to a doctor – or tried to anyway. So then I hope you were able to get into the book enough to imagine a life negatively affected by ongoing symptoms that have been ignored or misdiagnosed for years. And I hope you could understand the energy required to get ready for, and to go to yet another appointment, only to receive more lousy treatment. Finally, I hope you could imagine how utterly wiped out you would feel after the appointment and why you wouldn’t ever want to go to another doctor’s appointment again … yet you will because there’s always that tiny kernel of hope that maybe this doctor will be different, or maybe this doctor will look at the whole picture, or maybe this doctor will be willing to discuss the information from your online research.
If only doctors would take the time to imagine what life is like for a chronically ill person who comes to them for help – which was the idea that started my book!
Julie Jacobsen Deck 