UNIVERSITY OF CALIFORNIA PRESS, APRIL 2014Human beings are lucky to have such an amazing natural covering—our skin. We and our largest organ constitute a partnership that thrives every day as one nourishes, protects, and even learns from the other. Yet, sometimes there is a malfunction in our skin barrier, and in the pages of my latest book, The Blue Man, I explore both the reasons for and the stories behind these unfortunate maladies. The book describes 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 profit from getting to know our skin better.
Each day I try to heal the pain, both physical and psychological, caused by illnesses of the skin. On many days, my primary role is that of a sympathizer, explaining to many patients that their skin diseases are not only chronic in nature but, at best, only treatable in a palliative sense. Although there may be a general perception that most skin conditions are minor or superficial, patients with protracted and severe conditions often endure serious psychosocial repercussions. Not only can these illnesses disrupt their work lives, they can also disturb many activities of daily living, including sleep, hobbies, and social contact. Using the Dermatology Life Quality Index (DLQI), the Beck Depression Inventory (BDI), and other quality of life (QOL) studies, researchers have uncovered significant impairments in work, school, and personal relationships that skin conditions can cause.
During more than 30 years of clinical work, perhaps the most striking observations I’ve made are of how people with skin abnormalities cope with daily living. Patients with dozens of protuberant facial neurofibromas, spotted skin from widespread vitiligo, peeling and blistering skin from bullous disease, or devastating itching and scaling from psoriasis suffer not only from their diseases but from the racial connotations, metaphorical allusions, and symbolic roles attributed to the skin—our boundary with the outer world. I am forever amazed at how people carry on despite their cornucopia of weird pathologies and social indignations.
On a wider scale, the cost 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 and the Society for Investigative Dermatology that were designed to quantify the burden of skin disease showed that such maladies are more prevalent than anyone ever imagined—more so than obesity, hypertension, or cancer—and carry serious medical and financial consequences. Analyzing 22 skin diseases ranging from melanoma to acne, they estimated the total annual cost at $39.3 billion (in 2004 US dollars). 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 indirect costs associated with lost productivity because of these conditions totaled $10.2 billion.
In The Blue Man, and every day at my work, I ask many questions. What can we do to protect our skin? Will skin be different in the future? How does skin color affect one’s social position? What hardships do skin diseases impose? How do people with skin diseases view themselves and their opportunities in life, and how have their lives changed as a result of their illness and the ways they find to cope?
As a dermatologist, I know that the worrisome bumps, itchy rashes that won’t go away with over-the-counter treatments, or cosmetic concerns are what make patients walk in the door. Over the course of a day, I may listen to 50 or more of these complaints and try to problem solve and help ease the burden. While I focus on each person’s skin problem, the pain hidden beneath their skin’s imperfect armor is often revealed. In The Blue Man the patient is at the center of the story; the disease plays a supporting role. I am fortunate to be able to cultivate my stories from primary sources and to be there at the moment the tale is shared, often for the first time. Although the dialogue takes place primarily in the exam room, the history has occurred over years or decades, and my goal is to take that kernel of a patient’s story and make it come to life.
Robert Norman is an award-winning dermatologist who has been practicing for more than 30 years.