If you have a complex health problem that doctors have not yet solved this post may help you.
People with medical problems can begin to understand and deal with their difficulties by taking the time to record their stories. Illness narratives can document the patient’s understanding about what he or she is experiencing. Our bodies speak eloquently, but their languages are preverbal and idiosyncratic. The patient is the best one to translate her or his symptoms into whatever language their bodies speak.
Since doctors generally do not take the time to listen to their patients' stories, composing your illness narrative will help both you and your health care providers. This document will serve as a guide. Download Illness Narrative Guide 9.18