Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties
One’s twenties and thirties are a time for training, launching careers, starting families. For 27-year-old Edwards, there is also the matter of the genetic respiratory disease she suffers. In addition to having 1 of only 1,000 documented cases of PCD (primary ciliary dyskinesia), she has bronchiectasis, celiac disease, and thyroid disease. It has been “difficult to tease out where one disease ended, and another began,” and she has spent most of her life “looking for explanations of my illness that match my experience of illness.” Her research and interviews with others reinforced that she isn’t alone in her predicament. She cites real lives to illuminate such matters as the pitfalls of explaining rare and/or “invisible” illnesses and to address the financial downside of chronic illness with flexible approaches to enabling chronically ill workers to stay in the workforce. Soberingly, she imparts that more than 75 percent of marriages in which chronic illness figures end in divorce. Still, there’s that other 25 percent. --Whitney Scott