In The Blue Man and Other Stories of the Skin I try to reveal how lucky we are to have such a magical and amazing natural covering—our skin. Our skin and ourselves are partners in a world that thrives every day as one nourishes and protects and even learns from the other. Yet at times there is a breakdown in our cherished skin barrier and in the pages of The Blue Man I try to explore both the reason and stories behind it. The book includes the agony of certain diseases and their attendant psychological toll, how the skin and our perception of it influence our social, cultural, spiritual and physical being—and how we can learn and grow from our new knowledge.
Step into my office. Each day I try to heal the pain, both psychological and physical, that illness of the skin causes people. On many days, my primary role is that of a nurturer, and I explain that many of the skin diseases are not only chronic in nature but at best only palliative care can be provided. Although there may be a general perception that patients are only minimally affected by their skin conditions, those that have protracted and severe conditions often endure serious psycho-social repercussions. Not only can their occupational lives be harshly disrupted, but all activities of daily living, including sleep, hobbies and social contact may be disturbed. Using the Dermatology Life Quality Index (DLQI), the Beck Depression Inventory (BDI), and other Quality of Life (QOL) studies, researchers have uncovered significant impairments of work, school, and personal relationships.
During my over thirty years of clinical work, perhaps the most striking observation I have observed is how people with abnormalities of the skin cope with daily living. I have treated patients with dozens of protuberant facial neurofibromas, spotted skin from widespread vitiligo, peeling and blistering skin from bullous disease, and socially devastating itch and scaling from psoriasis. In these patients I have observed not only the diseases and abnormal variations on anatomy and physiology, but have also noted the racial connotations, metaphorical allusions, and symbolic roles of the skin as our boundary with the outer world. I am forever amazed at the varieties of afflictions that appear on our skin and how people continually survive and carry on despite their cornucopia of weird pathologies and social indignations.
The cost and burden of skin diseases is overwhelming. One in every three people in the United States suffers from a skin disease at any given time. Studies commissioned by The American Academy of Dermatology Association and the Society for Investigative Dermatology designed to quantify the burden of skin disease showed that skin disease is more prevalent than anyone ever imagined–more than that of obesity, hypertension, or cancer–and carries serious medical and financial consequences. Analyzing 22 skin diseases ranging from melanoma to acne, the total annual cost (in 2004 dollars) of the diseases was estimated at $39.3 billion. The direct medical cost for the 22 skin diseases totaled $29.1 billion, and the five most costly categories of skin disease are skin ulcers and wounds, acne, herpes simplex and zoster, cutaneous fungal infections, and contact dermatitis. The total indirect cost associated with lost productivity for these conditions was $10.2 billion.
Skin diseases can be expensive and time-consuming and can affect self-esteem, personal relationships, and careers. Many skin conditions are accompanied by visible physical abnormalities and can impose significant psychological burdens and limit quality of life. Patients with atopic dermatitis, acne, or psoriasis report greater detrimental impact on quality of life than patients with high cholesterol, hypertension, or angina. They also have health implications–predisposing individuals to infection, scarring, and other diseases.
As a physician, I am often required to peel away other possibilities to get to the source of my patient’s medical problem and repair what has been disturbed or broken. And with each problem comes a whole story that has preceded the person’s appointment to me. On the journey across the pages in The Blue Man, and every day at my work, I ask many questions. What covers us and what can we do to protect our skin and ourselves? How will the skin of the future be different? How does skin color affect one’s social position and how can diseases affecting the skin such as albinism impose real punishment? How do people with skin diseases see themselves and their opportunities in life, and how have their lives changed as a result? How do people cope with having bodies or diseases that aren’t “normal” in our culture?
As a dermatologist, I know that the symptoms are most often the problem–the reason the person walks in the door. The patient may have a worrisome bump, a rash that won’t go away with over the counter treatments, or a cosmetic concern. Over the course of a busy day, I may listen to 50 or more of these complaints and try to problem solve and help ease the patient’s burden. When it comes to the patients, I focus on the skin and its contents; the person living underneath the skin’s shiny armor is the character that is revealed during each episode. I may enter in median res, when the disease has been germinating for many weeks or months and the symptoms and signs have elevated to the point of the patient needing recue, or I may be involved very early or quite late. In The Blue Man I include information about the disease but the patient is at the center of the story and the disease a supporting actor. I am fortunate to be able to cultivate my stories from primary sources—the patients themselves—and be there at the moment the tale is being created, often told for the first time. In the words of one of my heroes, William Carlos Williams, I get to “witness the words being born.” Themes include the marriage of medicine and literature, reflections on what is happening today in medicine and the world, and how each person lives and interprets personal problems in unique ways. Although the dialogue takes place primarily in the exam room, the history has occurred over years or decades, and my job is to take that kernel of a patient’s story and make it come to life. Enjoy and learn.