Beyond a Sense of Safety:
A Psychologist’s Tale of Serious Chronic Illness
Robert N. Sollod, Ph.D.
Cleveland State University
Department of Psychology
Cleveland State University
1983 East 24th Street
Cleveland, OH 441115
Email Address:
Telephone: 216-523-7266
Abstract
Based on a narrative account, this paper highlights and reviews the experiences of the author, a psychologist, experiencing a chronic illness. Areas covered include coping with doctors and medical personnel, adjusting to illness, complying, actively coping, and even, at times, resisting unwarranted medical procedures. Experiences such as loss of trust, a sense of isolation, re-working relationships, and generative reaching-out are also covered. Some positive consequences of chronic illness for personal growth are suggested. Suggestions for conducting psychotherapy with clients who are dealing with serious chronic illness are made.
Keywords: chronic illness, dialysis, health psychology, narrative, positive psychology, psychotherapy
I am a psychology professor and a clinical psychologist who has focused on the areas of personality theory, theories of psychotherapy, and the relation of psychology and religion. I worked in a variety of clinical situations including doing individual psychotherapy for many years. After dealing with the vicissitudes of chronic illness in the form of End State Renal Disease (ESRD) for almost a decade, I wrote a narrative of my experiences, mostly in the summers of 2000 and 2001. The narrative continues to be a work-in-progress.
The process of writing was emotionally difficult and, at times, exhausting. I would recall a memory and then focus on the details as they recurred to me. Naturally, emotions would surface as I put these memories on paper. Some of the memories involved strong emotion. I do not believe that I had symptoms associated with these memories. Even though some were upsetting and traumatic, they were not that hard to remember. In some cases, the recollection of a specific memory led to more anger, sadness, outrage and other emotions than I had originally allowed myself to experience. A number of subsequent stages involved discussions and getting responses, recollections and contributions from family members, friends and health-care providers. Finally, I have used the narrative to gain insight into what I had been through. Reading about these experiences has also served to assist my fellow patients as well as to inform and train medical personnel.
In this article, I present vignettes and episodes drawn from my narrative in progress, “Beyond the Safety Net," then highlight some of the themes in this narrative. In the final section, I advance suggestions for psychotherapists or others working with patients facing serious illness.
Vignettes and Episodes from the Narrative Account
"Nothing to Worry About"
Back from an extended trip to Cyprus as part of my sabbatical in late 1990, I found that I was easily fatigued. J-------, my wife, and I joined a trendy health club to improve our fitness. On the first trial run, I quickly became out-of-breath and exhausted. I had to lie down on a bench in an anteroom. J------- was concerned, but I reassured her (and myself) that I was just in poor condition. “Nothing to worry about,” I said. “I just need to get in shape.” An exercise supervisor required me to get a doctor's approval before returning.
Stunned
A few days later, I visited my primary-care doctor, who examined me and ran some blood tests. At a subsequent appointment, he informed me in a matter-of-fact manner that my creatinine level was high, an indication of kidney failure. He informed me that my prognosis was end-stage renal disease, ESRD, with either dialysis and/or a transplant in the offing.
I was stunned. At first, I did not fully believe or accept this abruptly conveyed diagnosis. During the next few weeks, I spent long periods alone in order to make sense of my situation. I thought of illness and death while life around me went on as usual. Others were concerned with summer vacations, departmental politics, automobile repairs, minor medical problems and the news of the day. I wondered if I would have the strength to cope with what might be in store Loss of Trust
The abrupt diagnosis led me to lose trust in my doctor and the system. No doctor had ever indicated that I might be a candidate for kidney failure. My high blood pressure and protinuria had been treated symptomatically. My HMO physicians had never bothered to refer me to a nephrologist. I realized after a while that, even if they had, my condition could probably have not been prevented.
Blindsided
I left the HMO and joined another plan. I scheduled an appointment at a large teaching hospital for a more complete appraisal. After an initial interview and evaluation, I was marking time in the cafeteria. I was awaiting the results of a kidney function test. A loudspeaker announcement indicated that I should return to the nephrology clinic.
A staff person there said that it was important for me to be seen right away. “What's the urgency?” I asked a doctor. "We want to be able to see you next week." He said that, if I continued to take Vasotec, I might die suddenly.
Vasotec was the antihypertensive medication had been prescribed for many years. The doctor indicated that vasotec raises the potassium levels in people with kidney failure. My levels were potentially lethal. The first symptoms of too much potassium in the bloodstream, I was told, are cardiac arrest and sudden death. I was stunned by this news and befuddled by the doctor's casual abruptness. The Possibility of a Sudden and Mysterious Demise
I also pondered the insight that I could have died suddenly and nobody would have known why. I wondered how close I had come to sudden death.
Synchronicity
The very next day one of my students reported that her cat had been diagnosed with kidney failure and would shortly have to be "put to sleep." The cat had been urinating "all over the place" for many months and had finally been diagnosed by a veterinarian as having kidney failure. I was surprised and amused by the coincidence or synchronicity involved and offered, tongue-in-check, "Would you consider cat dialysis?"
Is Anyone Safe?
A week or two later I heard of an incident involving a friend of a friend. He was chatting with his wife at home and, suddenly, he said, “My heart just stopped beating.” He died right on the spot.
Personable but Dangerous
I reported the news about my near demise from Vasotec back to the affable HMO doctor, who had prescribed the Vasotec. In a barely audible voice, he indicated that he was unaware of vasotec's potentially lethal side effects in kidney patients. His ignorance might well have resulted in my sudden death, and nobody would have known why I died. As I left his office, I was disappointed and angry. I had been let down by someone I liked and had trusted. His warmth and concern did not compensate for gaps in his knowledge. He had nearly killed me.
Loss of Trust, Part Deux
I realized that I could not completely rely on physicians' advice nor ever again automatically trust their conclusions or regimens. I decided to become more self-reliant in my approach to medical care.
Brain to the Rescue
I tried to become an expert on kidney failure. I asked doctors and nurses many questions, did computer searches and read articles in medical journals. In a reflective moment, I thought, "My brain is trying to save my other organs."
Trying Most Anything
With the concurrence of a new doctor, I decided to try massive doses of cortisone in order to protect my remaining kidney functioning. I also tried alternative treatments, including hands-on healing touch, meditation and visualizing healthy kidneys. This approach was beneficial in that it increased my somatic awareness, bolstered my mood, and helped me access some suppressed emotions. But neither conventional medical treatment with cortisone nor alternative healing methods prevented the ongoing and inexorable deterioration of my kidneys… I felt better without actually becoming better.
Going Downhill
The next few years involved living with increasingly severe kidney failure. I became more and more uremic but did not yet need dialysis, my symptoms being fatigue, weakness, incessant itching, poor appetite, bloating, irritability, and difficulty concentrating. I had not known anyone who had kidney failure. I felt isolated in my struggle with this uremic syndrome. Not surprisingly, J------- was becoming more and more concerned about my deteriorating condition. Looking back, I think I did not admit to myself how upsetting my deteriorating condition was to her.
My Fault?
Some of my friends and acquaintances indicated that they thought my illness was a result of a personal failing of some sort. I found myself in partial agreement. They said that, if I changed my thoughts and emotions, my kidneys would improve. Having normal kidneys and being in good health, they exuded a distinct sense of superiority and self-satisfaction. They were also quick to recommend numerous forms of herbal and vitamin medicine, acupuncture or tai chi that had worked for them. I would not have time or energy for even a small fraction of them. One acquaintance confidently suggested that I drink a lot of water. I knew right off that this was bad advice for a person excreting little urine.
After a while, I realized that, in practically every case, those who recommended and swore by alternative treatments had not cured anything more than malaise, a cold, or symptoms of mild depression. I found their attitudes to be poorly informed, judgmental, condescending and irritating.
Pariah?
Some acquaintances, I found, actually started to avoid me. I was informed that my illness made one of them uncomfortably aware of his mortality.
Real Losses
My ill health was taking a real toll on my activities, one that I could no longer deny. I continued teaching but stopped seeing psychotherapy clients except for brief consults. This was the first time in my career that I was not engaged in the practice of psychotherapy. This professional activity was thus an early causality of kidney failure. I had to acknowledge the potency of this illness and the importance of physical health.
Awareness-of-Mortality Factor
Nonetheless, even before the term “legacy” became overused, I wanted to continue to work for a positive legacy, to leave something that I had created after me. Given my deteriorating health, it was a daunting and perhaps heroic goal.
Don Quixote Redux
During this period, I committed myself to initiating community service at the university. I was feeling very itchy, tired and nauseous much of the time. In spite of numerous obstacles and indifference on the part of some administrators, I was able to organize many faculty, staff and students to promote community service and service learning on our large urban campus. I was trying to make a difference in the limited time that appeared to be left to me. It was an often-lonely quest. I often tried to emulate the dying protagonist in Kurasawa’s film, Ikiru, who struggled to have a playground built in spite of terminal cancer and bureaucratic obstacles.
Solidarity!
I became very involved in helping to form a new faculty union. Even though not feeling well much of the time, I became the chief negotiator at the beginning of a difficult initial negotiation. Dealing with my illness had somehow helped me have the courage and toughness to face an unpleasant chief negotiator on the other side. My continuing struggle with a chronic illness cast a bright shadow in the high regard that many others in the leadership of the union felt for me. The teamwork and camaraderie with other faculty union members boosted my morale and helped me overcome a sense of isolation. The first contract was an important and meaningful accomplishment. Among other changes, salary minima for each academic rank were established. The sides agreed on clearly stated policies in many areas along with binding arbitration for disputes.
His Way or the Highway
Going against medical advice, I tried to stay off dialysis as long as possible. This could be accomplished by following a strict low protein diet - to keep the level of blood urea nitrogen low. This approach was controversial but had been mentioned favorably in some medical journals and by some physicians I contacted. My nephrologist disapproved. He insisted that I arrange for vascular surgery to make dialysis possible immediately and begin dialysis as soon thereafter as possible. He said that he would not see me anymore until this had been done. He did not return my phone calls.
Coping But Hard to Live With
Worry was something I tried to avoid. I reminded myself, "Worry is a luxury I cannot afford." I thought this discipline was needed to keep me able to function at work, to stay off dialysis and to avoid exhaustion. My approach was difficult for J------- to take. I started to become more and more aloof from the concerns of daily life. I was growing increasingly uninvolved with J-------’s concerns.
Sick and Smelly
I had become increasingly uremic. I remember that, during this period, I often engaged in meditative awareness of my body's movements as I trudged slowly and breathless to meet my classes. I started having frequent nosebleeds, one symptom of severe uremia. My skin developed a yellowish tinge and, as J------- let me know, I had developed a pronounced urine-like odor and was beginning to smell up the car. My doctor and I finally agreed that I had to begin dialysis. All of my efforts had not overcome the disease. My diagnosis was now end-stage renal disease (ESRD), a term that, for sure, is not a euphemism. I would need dialysis or a transplant to stay alive.
Scared
J------- and I felt apprehensive and disoriented when we first heard the details of dialysis. It triggered fears of illness, loss and death. Neither of us was confident about the future.
Untethered
As I approached the onset of dialysis, Dante's phrase for the sign on the entrance to hell occurred to me: "Abandon hope, all ye who enter." The future appeared bleak as I began to yield to hopelessness. I felt as if I were drifting, untethered, out into space - like the astronaut in the film 2001. I knew that I would shortly die, were it not for the invention of dialysis.
Transition
I entered a world that I had imagined only vaguely but dreaded nonetheless. I found myself sitting next to a dialysis machine in a room full of medical personnel and patients - with tubes attached to very large needles inserted into a fistula in my arm. A fistula is a vein that receives arterial blood flow as a result of surgically splicing an artery to it. My blood flowed out of my fistula through the tubes of the machine and the artificial kidney and back into my body. At times, I felt faint or had severe cramps. There were often problems with my fistula, including infiltration (the needle punctures the wall of the fistula leading to blood flowing in a painful bulge under the skin) or blood clots. The needles were often very painful. It was difficult to sit in a chair for four hours. The procedure was simultaneously awesome, frightening and reassuring. I felt more energetic and was less uremic after the first sessions. A machine could keep me alive.
The System
Dialysis nurses and technicians varied in experience, competence and in their degree of compassion and respect for patients. They often were overworked, under-trained and under a great deal of pressure. They were usually inadequately supervised. Some were caring, sensitive and competent. Others were not. A sadistic nurse refused to remove a needle she had inserted into a nerve plexus - in spite of my protestations of pain. Some rigidly adhered to dialysis prescriptions in spite of the fact that too much fluid was being removed. I saw a frail and elderly fellow-patient faint and lose consciousness from reduced blood volume. One technician lectured patients for their attempts to diverge from a doctor's outdated orders. Dialysis technicians often conversed with one another while they were inserting or removing needles or adjusting the machine. Some technicians refused to inform patients when they adjusted dialysis machines. Like other patients, I often felt helpless and frightened at the dialysis center.
History and Economics
I learned something about the economics of dialysis. Medicare had covered the expenses of dialysis patients since 1972. At that time, Senator Vance Hartke of Indiana introduced a bill to put dialysis patients, regardless of age, on Medicare. Prior to the passage of this bill, about half of those needing dialysis died because they could not afford treatment. Expenses are currently more than $30,000 per patient each year.
Resistance, Part I: Direct Disobedience
Once in intensive care from intestinal bleeding, I wanted to sit up because I felt uncomfortable lying down. The discomfort stemmed, without my realizing it, from fluid in my lungs from congestive heart failure. This is a common symptom of congestive heart failure. The hospital staff also did not seem to be aware of my condition. The intensive-care nurses were unhappy with my sitting up in bed. They wanted me to lie down in the bed and use a "potty.” I refused. I wanted to get out of bed and use a portable toilet next to my bed. My nurse said I could not be allowed to get out of bed because I might faint. I said I could stand up and judge if I got dizzy. The nurse did not approve. In desperation, I engaged in "civil disobedience." I stood up on the bed and, feeling steady, danced a little jig. I thought, "This is out of character." My behavior was clearly an intensive-care rule violation.
I said, "See, I can stand up on the bed. I can even dance. Look!" I felt much better standing as I could breathe more easily. My nurse repeatedly ordered me to get down, but I refused. She looked very distressed and backed out of my alcove. I did not see her again. A few moments later three other nurses and two large attendants appeared in my section. Expressionless, they observed me standing on the bed. I was afraid they would put me in restraints. I repeated, "You see. I can stand on the bed. Certainly I am able to use the portable toilet." After a few minutes of observing me, they left. A different nurse returned. She allowed me to get out of the bed and finally use the portable toilet. I felt relieved (excuse the expression) and vindicated.
Resistance, Part II: Just Say No, but in a Friendly Way
I was scheduled for diagnostic catheterization to discover the cause of the bleeding. The bleeding had stopped overnight. Early the next morning, I was taken to an operating room where a team composed of an anesthesiologist, several nurses, a doctor, a resident and others were ready to conduct this procedure. I had already been moved to an operating table and prepped for the procedure when the radiologist-in-charge came over and spoke to me. He informed me of the purpose of the procedure and the risks involved. I thought for a few minutes. I did not understand what point there was in trying to locate the source of bleeding that had stopped the night before. I refused to provide consent for the procedure. I said I would not agree to a procedure the purpose of which made no sense to me. The doctor replied that the team had come in especially early on a Sunday morning (7:30 A.M.) just to do the procedure. They were eager to begin.
Lying prone on the operating table, I used my best negotiating skills. I indicated in a friendly manner how commendable their behavior was and that I appreciated their dedication. I maintained that, nonetheless, there was still no point in conducting a useless and risky procedure. The radiologist left - saying he wanted to make a phone call. He returned shortly and reported that the chief of gastroenterology agreed with me. I was relieved and thanked him wholeheartedly. I felt triumphant when I found out that I would not have to undergo this procedure. I had broken the mold of the helpless patient. If I had been less informed or assertive, I would have submitted to an unnecessary invasive procedure.
Sentenced and Reprieved
I was finally referred to a cardiologist. My ability to function was impaired, and I often was exhausted and short-of-breath. The cardiologist discovered that I had mitral regurgitation enlargement of the left ventricle with reduced cardiac output. (Some months later, another cardiologist attributed this sudden heart problem to my voluntary participation in an experimental protocol with insulin--like growth factor a year earlier.) At the end of his examination, he said that my condition was inoperable - with inevitable deterioration and likely death in a few years!
I was stunned by this abruptly presented information. I found it hard to accept the notion that I would die before most of the dogs I knew. The next few days, I contemplated the implications of this medical appraisal. My situation reminded me of the case histories of voodoo death that I had mentioned in Abnormal Psychology courses I taught. I was condemned.
I was given an echocardiogram, a noninvasive diagnostic technique using computer analysis of reflected sound, the next week. After perusing the results, the cardiologist revised his opinion and said that my heart condition was operable. He recommended mitral valve repair. I had received a reprieve.
J------- as a Non-Person
The heart surgery involved a newly developed, minimally invasive technique. The heart-lung machine was attached to an external inguinal vein, which hemorrhaged after the operation. I lost a lot of blood and had a long and difficult recovery.
J------- spent 12 to 14 hours a day trying to comfort and protect me. I was not allowed many fluids because I still needed dialysis. She gave me small chunks of ice to wet my mouth. She was profoundly physically drained and emotionally shattered by my condition, but she fought courageously for my survival in the hospital. She felt isolated and beleaguered. The staff often dismissed her legitimate concerns about my treatment. For example, she witnessed a doctor say that I had to continue on a blood thinner administered intravenously for ten days. An hour later a nurse came in and removed the I.V. She ignored J-------'s pleas even though J-------
informed her about the doctor's orders. Another time, a painful catheter remained in my nose for a whole day past its scheduled removal in spite of her repeated requests for its removal.
My Dog as a Role Model
During this period, I thought of a dog, Taffy, we had when I was a teenager. Recovering from an automobile accident, she went through her paces slowly and stoically. I hoped for the strength to be as simple as she was in my coexistence with pain and physical limitations.
Not Much Point in “Just Trying”
Two colleagues, both prominent full professors, continued to smoke in their offices in proximity to me, in spite of my requests. This was especially galling because I was just back from the hospital. I had even informed them that I was suffering from congestive heart failure, anemia, pneumonia, and end-stage renal disease. I was obviously short-of breath and easily fatigued. One told me she was "trying to stop." I was angry at their callous indifference and insensitivity. I reported both of them to the university's affirmative action officer, in charge of rights of the disabled, who ordered them to stop smoking in the building. One of these colleagues has not spoken to me since – except for the most perfunctory of exchanges.
Preparing for Mr. Death, Just in Case
J------- and I discussed the possibility of my death. We prepared for it psychologically and in terms of specific plans and necessary preparations - such as writing a will and getting my papers in order. Given the difficulties of my recent surgery, death did not seem far away. I found I was not afraid of death but regretted that I would be separated from J-------. I also feared more pain and loss of control, which I had already experienced in the hospital.
Real Friends, Real Help
Some close friends and special colleagues came to my aid with many visits and with real assistance. Hospital and insurance company policies would have resulted in another premature discharge. A colleague's wife made an impassioned appeal to a medical director. He questioned her standing in her advocacy of my cause. She invoked her experience as a holocaust survivor to explain her attitude toward bystander responsibility. J------- accused the hospital of "butchering Bob” and argued for my transfer to a rehabilitation unit. The nephrology head commented, "She doesn't mince words." He was convinced to make the necessary efforts to enable me to remain in a treatment environment.
[Place Figure 1 about here]
Please be Sure Your Hands Are Clean….
Our dialysis center was bought out by a new company and moved to a different location. There was a large turnover of staff. Many inexperienced technicians were poorly trained, and there was sporadic supervision. I found myself cringing in fear as technicians went from one patient to another without engaging in the most basic sanitary procedures. I told a few technicians that I would not let them work on me until they washed their hands or changed their gloves. I emailed the CEO of the dialysis corporation that owned and operated our center. He replied promptly that he would try to correct the matter as soon as possible. I noted improvements in our center within a few weeks.
In the meantime, I asked our secretary to make an 8 ½” by 11” sign, which I taped on my dialysis machine for the next couple of weeks. It got my concerns across in an effective way that technicians did not take personally.
I mailed a copy of this sign with other material to Senator Grassley for his upcoming hearings on dialysis. His staff had the sign blown up to poster size. He used it as a prop for his televised statement on dialysis, which included allusions to poor technician training, lack of supervision and of oversight (Grassley 2000).
Feeling Better and Doing Better
Dialysis treatments have continued for the past year and a half. Dialysis is proceeding smoothly at present. I am allowed to set the controls for the machine on my own. My heart has improved. My right ventricle is no longer enlarged, no more signs of congestive heart failure are present, and my cardiac capacity is normal. The severe anemia associated with kidney failure has been corrected, and I have been free of pneumonia and other infections. My activity level is increasing, although at times I feel more fatigue than formerly. I have returned to active teaching, scholarship and psychotherapy practice. I have the energy to meditate and often experience feelings of inner joy and tranquility.
Becoming a Health Activist
In recent years, I have become more aware of the limitations of our treatment of dialysis patients. In the United States, the mortality rate has been over 20% a year, double the rate in other industrialized countries. This mortality rate indicates an average longevity of about three years for dialysis patients. Causes include an inadequate quantity and frequency of dialysis, lack of oversight, and poor training of technicians. The Health Care Financing Administration will not permit doctors to prescribe treatment in excess of their "one-size-fits-all" standards. I wrote opinion editorial pieces that were published on these issues and contributed testimony to a recent United States Senate hearing on the matter (Sollod, 2000). I have become active in a few organizations that promote better quality dialysis treatment.
Major Narrative Themes
As a summary of my experiences, I compiled a list of themes from the extended narrative
shock and disbelief
loss of trust in doctor(s) and the medical system
attending to my wife’s concerns and feelings about my illness. planning for an uncertain future
attempting overcome the illness by active coping including obtaining as much information as possible, finding more helpful doctors, obtaining experimental and alternative treatments
changing behavior in order to conform to treatment requirements, treatment to compliance
feeling of emptiness and despair, lack of groundedness, awareness of real losses,
finding humor, irony and synchronicities
mortality effect, impact of awareness of limited longevity
focusing on finding a spiritual and philosophical compass to deal with the illness
becoming resigned to accepting, living with the chronic condition, dealing with medical crises, becoming vigilant regarding my physical functioning ("My body is on manual, not automatic drive.")
learning to ask for and accept help
being disappointed by some people and helped by others
re-evaluating priorities, working to restructure aspects of my personal life as well as my professional life. Finding new ways to fulfill my sense of caring for others and my responsibilities to them.
direct confrontation, going AMA - against medical advice.
learning greater assertiveness to cope with the medical system, doing more research, eliciting help from advocates to deal with the medical system, especially during hospitalization
recording and expressing my experiences
helping other patients and helping staff in dealing with patients
reaching out to others including other professionals (including this very article)
working to reform the system, writing op ed pieces, participating in official patient advocacy activities, becoming involved in policy formulation,
Reflections on My Experiences with Serious Chronic Illness
In looking back over this medical Pandora’s box that I opened at around the age of 50, I realize that one consequence has been a period of precipitous personality change - one that has affected everything I do. I now tend to be more egalitarian and am less trusting of authority. By the same token, I am less likely to be authoritarian in my dealings with students and clients. I have lost most of the desire to control the behavior of others. At times, I think I would gladly trade places with most people in good health, regardless of their talents or abilities. I have become more aware of the fragility of our lives than many of my professional and social peers. I have felt a strong bond with many of the other dialysis patients and continue to spend more time with them than with any professional colleagues.
An extensive literature has grown on experiences of dealing with the medical system and chronic illness. Writers about the medical system have indicated patients' loss of trust with the development of managed care (Flocke, Stange & Zysanski, 1997; Kahana, Stange, Meehan & Raff, 1999). Hospitalization also requires the development of elaborate coping skills (Blau & Shimberg, 2000). In a recent work (Kahana & Kahana,2001), the authors have pointed out that patients often mistakenly make the assumption that our health care providers are knowledgeable about the treatment that we need and will consult with or refer our case to other more knowledgeable doctors when necessary. Obviously, this was not the case with the doctor in my HMO. My misconceptions about the health care system had resulted in a dangerous situation and, when I saw more clearly what had happened, some real disillusionment.
I learned that it was helpful not to make a drama out of the ups and downs of my medical condition, but to take them in a matter-of-fact way. The ideal of accepting life events and learning whatever one can from them has proven vital. Meditative practices and prayer proved helpful. This was true even when I was weakened from congestive heart failure, pneumonia, anemia and renal failure. An attitude of lack of over-identification with external and extrinsic aspects of myself - what Jung called the persona - was of benefit. The spiritual teaching that I was a soul and had a body was vital to me. A useful concept that I discovered recently was of psychologist Blair Justice's (1998) idea of being healthy in a sick body. I found that even when my body was frail and weak, I could still be happy and optimistic.
I have learned that I am stronger than I had thought, that I could survive devastating experiences and continue on with a positive attitude. I discovered that I did not fear death. This was a gift I did not work for. I found I was tougher than I would have guessed I might be. At the same time, I learned to ask for and accept help from others. My belief in the importance of transcendence has helped. I feel I have tested some spiritual principles and found them valuable. Prayer, spiritual practices, and forms of meditative awareness did not cure my kidney failure. They did serve to help me maintain an inner sense of well-being and connectedness with Divine love, regardless of any difficulties I had to endure.
I became disillusioned with institutions and with some relationships and learned to sort out what was valuable from what was false in both areas. Hospitals emerged as technologically advanced but also as flawed and cruel institutions. Health professionals varied in their expertise and compassion. Some seemed robotic and soulless. The concern and help of others helped me during difficult series of trials. J------- came through with flying colors. Some friends were reliable, others not. The upside of disillusionment is that I have found that it is not necessary to live with every illusion and that disillusionment can be liberating.
Implications for Psychotherapy with the Chronically Ill
During this time, I entered psychotherapy for a period of about three months or about 25 sessions. Much of each session was devoted to merely narrating the events of the week and my thoughts and feelings about them. I needed to talk about what was happening and felt that doing so with my wife would put a huge strain on my relationship with J-------. After a while, my therapist wondered aloud why I was in therapy. I said that I needed to tell my story because the events I was experiencing were so overwhelming. I assured him that this use of therapy was far from a waste of time and that I felt I needed to share what was going on with him.
So, one conclusion of my experience is that listening to the story of the patient's experience - often without interpretation - is very important in helping the patient overcome a sense of isolation. Recognizing the depths of despair and hopelessness a chronically ill patient may feel is important. Learning to express such feelings metaphorically or helping the client find the best metaphors can be very helpful. The feelings of despair, isolation, vulnerability and hopelessness that many chronically ill patients feel go far beyond the repertoire of emotions that they may have already experienced.
The therapist should support and encourage the client's efforts to learning about his or her illness. It is important to help the patient become aware of and adjust to the reality of his interpersonal world. Who is reliable and helpful? Who is indifferent or uncaring? Recognizing new realities can be upsetting. The therapist may assist the process of the patient obtaining information and making decisions about the course of treatment. Helping the patient develop the capacity to negotiate with medical personnel and to draw on a supportive network can also be of value.
It is important to help the patient become aware of his or her own experiences in dealing with medical personnel and health systems. It is sometimes necessary for the patient to overcome his or her stereotypes of doctors and other medical staff as necessarily compassionate and knowledgeable. Treatment compliance is not always the best or inevitable goal. At time it is necessary to support the patient’s questioning or even resisting medical prescriptions. The therapist can help the patient sort out when to be compliant, when proactive, when resistant. An excellent theoretical and empirical background for such therapeutic efforts can be found in Bandura (1977) idea of self efficacy and resilient agency.
The therapist can support the patient’s developing a philosophical or spiritual understanding of the significance of his or her chronic illness. The question of attribution - why is this happening and why to me? – and of guilt or blame is also worth exploring.
The psychotherapist should get away from an approach that places the medical system and doctors in a dominant and “always right” position in which the only role for the patient is to conform unquestioningly. The complexities and realities of medical care make such an approach unrealistic and risky.
We are all aware of the negative side of chronic illness. Patients need to be encouraged to find the positive aspects of such illness experience. Chronic illness may become an occasion for significant personal growth.
Finally, psychotherapists might well encourage the patient's illness-related generativity. This is particularly valid when the patient is able to contribute through creative work, social activism, volunteer activity or financial donations. Patients become more whole when they help others cope with and combat illness or improve the medical system.
Selected References/Recommended Readings
Bandura, A. (1997). Self-efficacy: The exercise of control. New York: Freeman.
Blau, S. & Shimberg, E (2000). How to get out of the hospital alive: A guide to patient power. Edison, NJ: Castle Books.
Flocke, S.A., Stange, K.C., & Zyzanski, S.J. (1997). The impact of insurance type and forced discontinuity on the delivery of primary care. Journal of Family Practice, 45, 129-35.
Frank, W.A. (1995) The wounded storyteller: Body, illness, and ethics. Chicago: University of Chicago Press.
Grassley, C. (2000). Statement on Kidney Dialysis Special Committee on Aging, United States Senate “Kidney Dialysis Patients: A Population at Undue Risk?” Senate Hearing
June 26, 2000. Washington, DC United States Government Printing Office, Serial No. 106-30,
3-7.
Justice, B. (1998). A different kind of health: Finding well-being despite illness. Houston, TX: Peak Press.
Kahana, E. & Kahana, B (2001). On being a proactive health care consumer: Making an "unresponsive" system work for you. Sociology in Health Care, 18.
Sollod, R. (2000). Special Committee on Aging, United States Senate (2000) "Kidney Dialysis Patients: A Population at Undue Risk?" Senate Hearing June 26, 2000. Washington, DC United States Government Printing Office, Serial No. 106-30, 439-472.
Please be sure your hands are clean and that
you have new gloves
before
working on me
or with tubes containing my blood.
Figure 1. Sign that I Taped on Dialysis Machine to Remind Technicians of Proper Procedures.
