Increasing Our Sensitivity to Chronic Illness and
Post-Surgical Trauma: A Survivors Perspective
Christina Peters, M.S., Ed., B.C.S.C.R.

It is a typical morning. The alarm clock goes off and I try to ignore the intense pain that permeates my skull. I gather all the strength I can muster and struggle to get up. It is a weekday so I dress accordingly and hop in my car not forty minutes later. About halfway through my morning commute I realize that I havent the slightest idea of where I am nor where my final destination should be. A shocking lava of emotions erupts as I aimlessly drive: fear, confusion, embarrassment, solitude, anger. Where do I work? What do I do for a living? I should call into work and let them know Im running late but I dont know who to call. I have suddenly lost my identity but try to remain calm and composed. It will come back to me. It always does. Time feels as though it is standing still. Half an hour goes by and I begin to envision myself working in a school. Am I a teacher? Where are my lesson plans? Suddenly, it hits me! I am a school counselor. Everything starts coming back to me and I arrive at work, about an hour past due.

The above scenario is just a taste of the ongoing battle I have fought in the aftermath of a post-surgical craniotomy. It all began at the age of 22 when I started experiencing bouts of severe vertigo, headaches, nausea and vomiting. Later I noticed that I was losing my hearing in my left ear and was having hemifacial spasms. I had gone through three years of negative MRIs, CAT scans, and other tedious medical procedures and evaluations. I had been misdiagnosed with a spectrum of maladies among which included an Arnold Chiari malformation, Familial Mediterranean fever, acoustic neuroma, and even Multiple Sclerosis. At last I found two caring and knowledgeable doctors who were able to perform the necessary surgery for my rare facial nerve hemangioma. I lost all of my hearing in my left ear and subsequently went through two years of facial paralysis, two bouts of meningitis, two cerebrospinal fluid leaks, two left neck neuromas and a variety of other conditions including pneumonia, daily nausea and vomiting, and kidney failure. I even had appendicitis which had gone undiagnosed for three months despite two visits to the ER, several diagnostic tests, and finally, a laparoscopy.

On a daily basis I faced the penetrating stares and questions of insensitive people who would inquire: "Whats the matter with your face?" "Why do you talk funny?" "Why dont you ever smile?" "Why do you slur your speech?" I prayed that the nerve graft that was performed would grow faster than the expected one millimeter a month. I was forced to sleep with an eye patch to prevent a corneal abrasion since I was unable to close my eye. I would avoid eating in public because of the embarrassment I felt when the food drooled down the side of my mouth, and would hate having my picture taken because I could no longer smile and my face appeared deformed.

Five years later I am still haunted by various residual effects in addition to other unfamiliar ones and the fear of the tumor returning. Having had formal training as a school counselor and having personally experienced the physical and emotional trauma of a serious illness, it is in this spirit that I offer what I hope will be some useful tips in helping someone deal with a serious illness. I have searched my memory bank and have gathered a collection of thoughts, some from personal experience, and others that I might have read over the past several years. We, as caring professionals family members, and friends are an essential component to a timely recovery for the survivor of a life-altering medical condition.

For the Helping Professional, Family Member, or Friend

Listen and allow the survivor to vent. Do not feel the responsibility to "solve the problem" where there often is no solution. More often than not, a person is only in need of an empathetic ear.

Validate the survivors feelings. Do not attempt to instantly "cheer him up" and insist that he immediately "think positively." A patient needs time to mourn a physical loss before he can begin to accept it and move on.

Do not assure the person that "everything will be okay" since you cannot guarantee that and he may feel as though he is being denied the right to complain and worry. Instead, emphasize that you will be there physically and emotionally for support. It is important for the patient not to feel abandoned after being diagnosed with a serious medical condition.

Understand that it is normal for a person with a serious illness or disability to have occasional thoughts of not wanting to be alive but be vigilant that intrusive and persistent suicidal ideation should be met with the proper medical intervention (e.g., psychotherapy, support groups, antidepressants, and, if severe enough, hospitalization to prevent a successful suicide attempt).

Show concern but do not inundate the survivor with an endless list of "new medical breakthroughs" that can cure whatever ails him. It is good to be hopeful but simultaneously remain realistic about his chances for a full recovery.

Offer to help but do not insist. Sometimes the survivor needs time to figure out what he needs help with and when he is ready to ask for it.

Help the survivor tap into resources and employ a support system of family members, friends, and professionals.

Help the patient understand that illness and disabilities elicit a myriad of emotions from people: fear, discomfort, awkwardness, pity, embarrassment, and even anger. Many do not know how to respond to illness and will avoid the subject altogether. Some will even distance themselves from the patient, not because they dont care but simply because they feel awkward and don't know what to say.

Assist the survivor in being as independent as physically and mentally possible. This will help increase his sense of worth.

Finally, do not allow the person to be identified by his illness or disability. (I was once introduced at a party as "the girl with the brain tumor"). Instead, emphasize the survivors talents, abilities, and character strengths and help him in his transition from a victim to a survivor, and ultimately, a thriver.

©1999 by The American Academy of Experts in Traumatic Stress, Inc.