In response to a recent post on eczema and sleep disturbances, Mary wrote:
I had severe eczema as a child in the Forties and later as an adult... I was deeply ashamed of how I looked, wore long sleeves in hot and humid upper NY State late springs and summers - which, of course, exacerbated the rash, the skin weeping and the secondary effects of scratching. I was already an anxious kid who got picked on, so this made me feel even more weird and unliked. I'm surprised at the flood of memories and emotions that this post released.
This made me consider how our perceptions of disease and its effects on personality and identity have changed significantly in the last few years.
Anyone sitting through the commercial breaks during the evening news will see handsome and attractive people cheerfully discussing how they're overcome their impotence ("erectile dysfunction") or incontinence ("overactive bladder"), only two of a myriad of problems which, until recently, were kept hidden behind thick veils of shame and not discussed in public (certainly not on prime time television!).
The message one gets very clearly is that disease is an inconvenience which, with the aid of the new miracle drug de jour, can simply be gotten rid of, like a grass stain on a white pair of pants, never to be thought of again.
This is a very new approach, one, admittedly, which owes as much to the advances of modern medicine as to the ability of doctors and pharmaceutical companies to market themselves and their wares as able to bestow health and longevity, while leaving the inevitable slow decay and demise of all mortals entirely out of the conversation.
Until recently, disease was seen as something which not only affects one's physical well being, but also as having a profound influence on character and personality. Writing about tuberculosis*, Susan Sontag describes the widely held belief of in the nineteenth century of it "produc[ing] spells of euphoria, increased appetite, sexual desire... An upsurge of vitality". She also writes that "the dying tubercular is pictured as made more beautiful and more soulful... TB was thought to come from too much passion". Even until very recently, it was common to talk of an asthmatic personality, though now, in the era of more effective medications and "ask your doctor if ___ is right for you" advertising campaigns, there has been a definite paradigm shift in how doctors and patients relate to it and the tolerance for the effects it can have on day to day living.
In medical school we are taught to treat the disease itself and not just its symptoms. I would argue that treating disease includes treating its psychological and psychosocial effects and not merely focusing on its physical manifestations at the exclusion of everything else.
Disease has always been part of the human experience, and this will not change. The effects of disease on those afflicted extend far beyond the narrow lists of symptoms and complications which can be found in any medical textbook. Recognizing this is vitally important for physicians and other caregivers, whether professional or family members and friends, as Mary so thoughtfully makes clear. While it would be worthwhile for patients to remember this as well, the capacity for this kind of insight is one of the first things which is incapacitated or lost entirely.
*"Illness as Metaphor and AIDS and Its Metaphors" by Susan Sontag, Picador, New York. ISBN- 0312420137
