Disease Begins Before Diagnosis

Most people who are diagnosed with a chronic illness go through a totally predictable diagnostic process but we never see this process represented accurately in the media. Misconceptions about the process can put undue pressure on doctors to diagnose quickly, isolate patients from their healthy peers, and prevent patients from seeking life-altering accommodations as soon as they are needed. When they first become symptomatic, many patients head to their primary care physician expecting the kind of rapid diagnosis we see on TV shows like House. Patients (and their friends and families) often expect that diagnostic testing will quickly reveal the cause of their symptoms and suggest a clear path to treatment. Despite the prevalence of stories like these in television and film, they are not at all typical for patients who are eventually diagnosed with autoimmune diseases, genetic disorders like Ehlers-Danlos Syndrome, and sometimes- controversial clinical diagnoses like fibromyalgia, ME/CFS, and Lyme Disease. Statistics vary by individual condition, but most patients wait at least five years for a diagnosis. People in this stage are often classified as problem patients, the worried well, hypochondriacs, malingerers, and even drug seekers. People in this stage feel isolated and crazy and scared because their bodies are failing them but nobody knows why. Their mental health is often seriously impacted and they clog up emergency rooms that are ill equipped to handle chronic issues. People in this stage have little support from friends, family and employers because many members of the general public don't know that you can be sick for years without a diagnosis. They watch House or Grey's Anatomy or ER and they believe somehow that diagnosis is instantaneous if you have a good doctor and a real illness. Everyone with a diagnosed chronic condition has lived through this diagnostic limbo, and almost none of them knew that it was a totally normal part of the diagnostic process. Most people don't find out how common it is until they've been diagnosed themselves. Until they've connected with a support network and realized that other people went through that same period of fear and uncertainty. My talk will explain the diagnostic process in more detail with a few specific stories, outline the support gaps that are caused by delayed diagnosis, and offer a few specific ways to support friends, family, and colleagues who are navigating diagnosis right now.