Joan Chen is the mother of a son with severe, complex health concerns. Every day she struggles with paperwork and the confusing bureaucracy of the healthcare system.
Joan Chen’s life is not easy. She feels like she spends every hour worrying about her son Billy. While pregnant, Joan was exposed to rubella and Billy was born with complications resulting from the disease, including cataracts, hearing loss, and congenital heart disease. Joan says that taking care of Billy’s healthcare needs is another full-time job, but the truth is it’s far more stressful than her day job. Being a full-time mother to a sick child is exhausting enough without having to mentally juggle the details on who Billy has seen previously, where his medical information needs to be shared, and how his providers would like to be updated. Nothing is as easy as it should be, and many times Joan feels like the healthcare world is working against her. She dreads answering the phone when it shows an incoming call from another healthcare office worker. Joan sometimes feels she spends more time updating Billy’s specialists than she does with her own child. Billy currently sees 13 different specialists and physicians. Joan can never assume for a moment that each of his doctors are on the same page, so the trunk of her car is filled with files and boxes of healthcare information and prescription receipts. She keeps the important information in binders and sometimes jokes about what a workout they are for her to carry. At this point she would love anything that could help keep everyone informed and make her life easier. She would love to no longer worry about what healthcare surprises tomorrow will bring.