The Dis-Ease of Chronic Medical Illness
Attending to the psychological needs of the Chronically Medically Ill
Posted March 25, 2011
By Ruth Livingston Ph.D.
Chronic Medical Illness is a huge, non-exclusive "club". Astonishing, then, that so little attention is paid to members' psychological challenges.
And make no mistake, the membership is vast. A 2004 report published by the Robert Wood Johnson Foundation estimates as many as one in two has at least one on-going or recurrent illness/impairment, while the U.S. Department of Health and Human Services recently estimated one in four has two or more such conditions.
Considering such numbers, one might think this club is popular. But as a psychologist specializing in working with the medically ill I've learned over and over it is not: no one wants to join. Yet, many of us do, albeit reluctantly. I, myself, am also one of those reluctant members.
Reluctant, because club membership comes with a host of unwanted "perks". These include: isolation and marginalization; profound losses to one's sense of self and body integrity, independence and sense of immortality; as well as constant worries about uncertain future and the effects the illness has or will have on friends, family and professional relationships, career, and finances.
Initiation may be sudden, or more gradual; regardless, club membership separates members from non-members—and sometimes from the person the new member once was. In fact, the psychological separation can become so wide that unless you already belong (or about to join, like it or not), you now may be tempted to stop reading. But please don't stop reading; people with a chronic medical condition are not "other". We're still you, and we need your help.
Chronic medical conditions are illnesses and/or physical impairments that are expected to last a year or longer, limit what one can do (as in activities of daily living), and usually require ongoing medical care and attention. In this broad category one might find—among other conditions—Arthritis, Asthma, Cancer, Cerebral Palsy, Chronic Fatigue Syndrome, Chronic Respiratory Conditions, Diabetes, Heart Disease, HIV, Irritable Bowel Disease, Lupus and other Auto-Immune Disorders, Multiple Sclerosis, Parkinson's, Post-Polio Syndrome, and Spinal Cord or Traumatic Brain Injury.
Quite a heterogeneous list, indeed. But as different as these conditions may be, those who are among this un-desirable fraternity of the chronically medically ill often share a common psychology: mourning, denial, shame, anger, fear, frustration, passivity, resignation, self-pity, resentment, adjustment challenges.
If this is not enough, the outside world adds another layer. Sickness in our society is taboo, so it's not surprising that many chronically ill patients talk about stigma and rejection—both by individuals and the culture. Pity, for example, (as differentiated from empathy and compassion) is most unwelcome since it presumes a hierarchy, with the healthy person, above—and the one with illness, below. Over-protection by well-meaning friends and family can leave the one who is medically compromised feeling infantilized. And skepticism about symptoms and suffering, especially if the illness is not visible or has yet to be diagnosed, plagues the ill person and often contributes to his or her inner shame, among other possible effects.
Clearly, how one manages such a complex set of psychological challenges can make a difference in the course of illness: how the person ultimately feels about him or herself as a "chronically ill club member" and how others respond to the member as a person. Sadly, club members are themselves not always attuned to the myriad effects and may not seek outside treatment or help for their emotional responses.
What's more, their doctors are often be ill-equipped to help when it comes to these psychological issues. When queried, a group of physicians (many of whom consider chronic conditions their "bread and butter") said their training did not adequately prepare them to manage the psychological and social aspects of chronic care and agreed that patients with chronic medical conditions often had mental health needs that were not being met. This is an especially sad state of affairs since it's well documented that the combination of medical and psychological treatment for medical conditions predict the best outcome.
Here's a short list of some of the things members of my club—the club of the chronically medically ill—need:
- For others to treat us, whenever possible, as members of the more "accepted club" of the completely healthy.
- For a witness, an "other" who can tolerate our experience (including the sometimes harrowing details of illness), and who does not tire hearing us talk about it.
- For a mediator, someone who can explain to family, friends, co-workers, others how to be with us, follow our requests, and understand our predicament.
- For a trusted other—ideally an unbiased presence—who has the courage to ask the hard questions, who can draw us out enough to hear the unspoken, sometimes unconscious, feelings about a life that has dramatically shifted: externally—that is, how one is seen by others; internally—how a member sees oneself, now and in the future; and mortally—how one copes with the unbidden awareness of the fragility of life.
Meeting these needs may actually make the difference between a positive or an adverse outcome, both medically and emotionally. Indeed, in time, we can become more resilient and accepting of our medical conditions. And, while it's likely we'll hold onto this burdensome club membership, perhaps, one day, it won't be so hard to belong after all.
About the Author:
Ruth Livingston, Ph.D., is the Founder and Director of LIVING WITH MEDICAL CONDITIONS, a study group and referral service affiliated with the William Alanson White Institute, and Executive Editor of the Institute's professional journal Contemporary Psychoanalysis. She holds a certificate in Bioethics and Medical Humanities from the Albert Einstein College of Medicine and Yeshiva University and is also on the faculty of Columbia University Teachers' College. Dr. Livingston maintains a private practice in New York City, in which her specialty is working with the medically ill. She writes and lectures on the subject of psychoanalytic treatment for those with acute and chronic medical conditions. See www.ruthlivingstonphd.com.
© 2011 Ruth Livingston, All Rights Reserved