The "Psychological Emergency" Of New
Onset Physical Disability And Deformity

Kamela K. Scott, Ph.D.
Kamela K. Scott, Ph.D. is a Clinical Assistant Professor in the
Department of Surgery at the University of Florida Health Science
Center, Jacksonville. Dr. Scott is a licensed Psychologist
serving the Division of Trauma / Critical Care.

"Rob the average man of his life illusion, and you rob him of his happiness at the same stroke..." Herik Ibsen

The psychological "experience" of physical disability and deformity encompasses myriad emotional reactions, a "call to arms" of one's coping repertoire and defenses, and a journey of personal challenge through the caveats of despair and loss to the ultimate reclaiming of oneself. Extreme in its significance, the psychological side to injury and healing is nonetheless minimized, if addressed at all, within the clinical domain. Perhaps this is resultant of our own incapacity, within health care, to confront our human fragility and vulnerability. In casual conversation with a colleague, the following was provided:

I don't allow myself to relate to my patients...in caring for a patient with bilateral upper extremity traumatic amputations...if it happened to me, nothing in life would be worth living...can you imagine? A physician without hands? My career, my livelihood, all that I deem important...I can't...I won't.

Yet the psychological side to injury and healing is paramount to physical rehabilitation and imperative to the art of practicing "good" medicine. What, then, does it mean to "experience" physical disability on the emotional level? How does one traverse the experience to arrive on the other side, not O.K. with the event but O.K. with oneself? This article provides a general overview of the psychological "experience" of physical disability, from encountering disillusionment, through the work of adaptation, to treatment considerations focusing on positive emotional recovery. Due to space constraints, discussion will be limited to new onset physical disability and deformity occurring in adulthood. The article aims to signify the importance of psychological factors in healing and recovery while challenging the practitioner-reader to evaluate his or her own perceptions of, tolerances for, and attention to the "human drama" of emotion.

Experiencing Disillusionment

Traumatic events occur at all times, across all socioeconomic classes, and with no particular bias for age, gender, religion, occupation, etc. Tragedy can strike, at any time, and with little or no forewarning. It is the unexpected tragedy that highlights our own beliefs — beliefs in the world at large, beliefs in ourselves, and beliefs in the cause-and-effect nature of crisis. These beliefs, or assumptions, guide our daily interactions, thoughts, and behaviors. As Janoff-Bulman² states, tragedy forces the realistic appraisal of these beliefs and the immediate impact of their naivety:

My world is benevolent. Even in such a good world negative events happen, even if relatively infrequently. Yet when they occur, they are not random, but rather are meaningfully distributed. They happen to people who deserve them, either because of who they are or what they did or failed to do. I am a good, competent, careful person. Bad things couldn't happen to me.

Through tragedy, patients experience the loss of former beliefs and views that defined their existence. Cause-and-effect contingencies are challenged, as the patient realizes the lack of control he or she has in the world and the sense of meaning or loss embodied therein².

Denial And Intrusive Recollections

Horowitz ³ presents a model of adaptation following sudden physical disability, which includes the following phases of recovery: outcry, denial, intrusiveness, working through, and completion. Initially, following the tragedy, the patient shifts to a state of shock or emotional "outcry". This prompts mobilization of the psychological defenses. Denial and repression are the primary defenses utilized in the face of tragedy. Patients may deny the mechanism of injury, severity of injury, the prognosis regarding level of functionality, the need for surgical interventions, and the impact of the disability — temporary or permanent — to their overall life functioning. Many times in clinical practice, I have heard the new onset paraplegic state, "I know they are wrong ... They don't know me. I'm different. I AM going to walk again!" or the survivor reporting, "Life is so wonderful ... I know I've been injured, but I'm just happy to be alive! Nothing has really changed", said as I look in the face of the twenty-one year old traumatic lower extremity amputee, fear hiding behind eyes of stoic heroism.

Denial, initially adaptive in allowing the patient to avoid overwhelmingly painful emotional stimuli, then permits the patient to experience the tragedy in smaller, less distressing chunks². It allows the patient to process events surrounding the trauma of disability in pieces, typically through intrusive remembering. The patient begins to experience nightmares, flashbacks or reliving of the events. Not only do recollections of the facts and images emerge, but also revisits to the emotional experience and the intense feelings of helplessness, fear, and anxiety. As Janoff-Bulman indicates, the patient's mind seeks confrontation, reevaluation, and integration of the experience through reliving and recalling. Intrusive recollections become paramount to clarification and adaptation².

Working Through

Count The Losses

New onset physical disability engenders countless losses — loss of body parts, loss of functionality, loss of self-image, loss of personal integrity. As Nemiah⁴ summarized:

Hopes and aspirations must be modified income and security for his family and himself are threatened; his position in the social structure is altered; feelings of helplessness and weakness replace his former sense of strength and competence. All that...forms a person's concept of himself is jeopardized...loss may involve physical objects...and psychological entities — self-concepts, ideals, social status, etc.

The patient is confronted with the task of grieving which, for these losses, is not unlike the grieving process outlined in Kubler-Ross' work on death and dying: Denial, anger, "why me," depression, bargaining, and ultimate acceptance of the loss⁵.

The grief process may take days, weeks, months; as Langer relates, future goals and aspirations may be destroyed, "knowns" about the present challenged, to be replaced instantly with anxieties and despair for the unknown future⁶. Depression becomes the frequent response to the multiple losses, as described in Langer's 1995 study: Physically disabled patients were found to demonstrate two times the prevalence of major depression as the norm, with results suggesting no relationship between depression level and severity of disability⁶.

Grieving And Depression

Although widespread and uniformly documented, depression following the experience of traumatic disability remains frequently misdiagnosed and untreated. The impact of this oversight may interfere with overall effective treatment and rehabilitation⁷.

As Rybarczyk, Nyenhuis, Nicholas, et al demonstrate, the incidence of physical disability, along with comorbid depression highlight the need for increased awareness and effective treatment within the domains of physical, surgical and orthopedic medicines⁸.

In her work on depression and persons with disabilities, Langer identifies the following factors for consideration in effective identification and treatment of depression:

1. The future course of the condition, new losses or expected declines;
2. The amount of time since onset;
3. The issue of accompanying physical pain or discomfort;
4. Personal (premorbid) affective and cognitive style;
5. The social resources available to the person, versus the depletion of social resources;
6. The meaning of the disability to the patient in considering both Narcissistic colorations and the actual or perceived impact on functioning;
7. The meaning to others in society;
8. The personal ability to sustain hope regarding opportunities for the future as well as about any aspect of experience in life and find some sense of purpose or meaning in it;
9. The "domino" effects of disability on other factors such as financial status, environmental accessibility, quality of living, stress on existing social networks, and stressors to future social contacts, etc.;
10. The prior experience with, and meaning of, disability that may render disability meaningful as a life challenge or simply add to the strain of preexisting multiple chronic stressors upon coping resources⁶.

Effective identification and management of depression is essential to the overall assessment of the patient's recovery status. Depression may underlie perceived and prolonged pain, development of secondary comorbidities such as alcohol and substance abuse, secondary gain issues, anxiety disorders, and extended hospital stays with prolonged physical recoveries^9-20.

Social Support And Adjustment

As with any loss, social support is integral to effective processing and ultimate acceptance. In the case of the physically disabled, social support may be the patient's greatest ally or worst enemy. Societal demands for physical perfection make adjusting to and living with a physical deformity difficult and acceptance of the patient the exception^21-24. Indeed, as Wright points out in his work with patients with a physical disability, positive adaptation is consistent with a decreased focus upon the "stigmatizing attitudes and behaviors" of others²⁵. Conversely, Rybarczyk, et al found that the best predictor of depression in patients was the perception by the patient that others maintain stereotypical attitudes secondary to the disability²⁶. While most in the patient's social circle may desire to support, it is their own fears of vulnerability and awkwardness in the face of the disability that preclude their positive interactions. Following the acute phase, social supports tend to decrease, as friends and colleagues return to the "world of the functional."

Impact On The Family

Physical disability of any member of a family impacts the family system to a similar extent as the impact on the patient. However, frequently the emotional sequelae of family members is not addressed, as the focus necessarily shifts to the patient. Family members experience similar feelings of anxiety, fear, depression, despair, and conflict, yet often are left to "deal with" their emotions in isolation²⁷. Family members, too, must grieve the many losses commensurate with new onset physical disability, as any change affects the family unit. After injury, the major life roles of work and home family may be disrupted and, while the patient may desire to continue to contribute in these roles, his/her ability to implement these contributions realistically becomes the issue²⁸. There are changes in family finances, leisure activities, social contacts — the balance of life roles has been altered and the family forced to adapt.

Necessarily, treatment of the psychological factors relating to physical disability must include identification and intervention with various family members, addressing their emotional response, grieving of losses, and overall adaptation. Recognition of concomitant feelings of anger, guilt, resentment and conflict is essential²⁷. Practitioners may promote the greatest impact on the psychological recovery of the patient by addressing the needs of the family unit because ultimately, the patient will return to this system — be it chaotic or resilient.

The Search For Meaning

In working through the emotional "experience" of physical disability, the patient must also evaluate the meaning behind the onset of disability in a search for control and a need to make sense of a world that simply makes "no sense." For most, negative life events promote an intense and personal search for meaning. Individuals who seek a positive explanation relating to the tragedy tend to demonstrate improved psychological adaptation²⁹. As Thompson states, perceptions of control over the disability appear modulated by the search for positive meaning amidst adversity³⁰.

As described by Janoff-Bulman, in striving for emotional stability, patients may employ various strategies such as comparisons, self-blame, and transforming the experience². Some patients seek conformation that, "it could have been worse," by comparison with others less fortunate. This downward comparison serves to highlight the patient's fortitude, promoting commensurate experiences of positive meaning. In evaluating the experience, patients also may blame themselves for the incident. By asking questions such as, "Why did I..." or "If I only would have...," the patient confronts the tragedy and, again, attempts to understand it and/or make some sense of it. Self-blame is adaptive when the patient is able to separate the behavior from the person. For example, a patient who believes he has driven carelessly should also believe the careless behavior does not imply he is, as form of character, careless². A third strategy, transforming the experience, finds the patient coming to view the suffering as purposeful and learning valuable life lessons in the process³⁰.

Coping vs. Succumbing: Therapeutic Considerations

Working through the psychological "experience" of physical disability finds the patient as either successful in coping or having faltered in succumbing to the disability. Initially, with the onset of physical disability, the patient is confronted with the "I can'ts" before he or she ever is able to see the "I cans." Effective coping and adaptation does not imply disregard for the difficulties, but rather dealing with the obstacles. Table 1²⁵, outlines the characteristics of the patient who "goes for" versus the patient who "gives in." The goals in intervention include focusing on the coping possibilities, while, at the same time, normalizing, preparing, caring, and teaching. Patients must be adequately prepared for the "experience" of disability to the extent possible. Recognizing that taunting, ridicule, and avoidance are real, the patient understands that difficult social encounters will occur. Role-playing, discussions with a person who "knows" (a similarly disabled person), and group discussions and sharing facilitate the preparation for "real world" functioning. Described by Wright ²⁵, being a "caring other," can further promote coping. Development of a positive and supportive relationship confirms that others CAN be good, CAN accept, and CAN be trusted. Additionally, through caring, the patient begins to believe that he is worthy of such a relationship. Finally, teaching the patient and family members new strategies of confrontation and integration promotes effective stabilization between denial and intrusive remembering. As Wright concludes, "Once you know that catastrophe dwells next door and can strike anyone at any time, you interpret reality differently."

A Model Program For Successful Intervention

Recognition of the psychological impact of physical injury and disability presents treatment systems with the challenge of addressing these issues in a comprehensive, cost-effective manner. The epidemiology of disability, psychological sequelae, medical and psychological care guidelines, and the overall practice of "good" medicine, should stimulate health care systems to develop effective and innovative programs. Designed to facilitate adaptive emotional recovery along with successful physical rehabilitation, one such program was initiated at University Medical Center, Jacksonville, Florida, in January 1995. This program is proving to be successful in promoting an understanding of the "whole person" model of treatment when dealing with survivors of traumatic injury and disability.

The goal of rehabilitation (maximum functional independence)³¹ in and of itself precludes the view of disability through "rose colored glasses." Psychological support and attention are paramount to the success of any rehabilitation effort, even in the acute phase of treatment. In recognition of this, the University of Florida Health Science Center, Jacksonville (UFHSC-J), contracted with a licensed psychologist to serve as a full functioning member of the faculty within the Department of Surgery.

The primary role of the psychologist within this program is that of adjunct treatment practitioner. Success in the program is contingent upon a cooperative effort by the psychologist and the multiple physicians who are involved in the treatment of the patient. The psychologist provides thorough evaluation of the patient's psychological functioning, including premorbid factors which may affect rehabilitation status, and the patient's emotional response to the disability. Psychological "first aid" is provided to the patient and family and continues throughout the hospital stay, dependent on individual and family needs. In an effort to promote adaptive "working through" of the many losses, grief therapy is an integral component of the psychologist's work. As needed, the psychologist arranges further psychiatric medication evaluations and assists with referral for follow-up psychological services upon discharge. The psychologist regularly advises the treatment teams of potential psychiatric comorbidities, such as depression, maladaptive denial, alcohol and substance abuse, acute stress disorders and adjustment disorders, because of the possible impact of these factors on the patient's physical recovery. Every effort is made to promote continuous and comprehensive care from the acute entry into the system to the transition toward rehabilitation.

From its inception, the program has dramatically differed from other psychiatric consultation / liaison approaches, because the psychologist is an integral component within the Department of Surgery and is not a separate entity. This placement facilitates daily communications between the psychologist and the surgical/medical teams, fostering a multidisciplinary approach through active and regular interactions. Additionally, as UFHSC-J is a medical teaching facility, housestaff and medical students alike are gaining a new understanding of the importance of psychological factors in disability and recovery and the resultant shift toward effective treatment of the "whole person."

Conclusion: Emerging On The Other Side

The occurrence of new onset physical disability presents the patient with, not only a physiologic emergency, but also with a psychologic emergency. Patients are confronted with an intensity of emotional experience and loss for which they are typically ill prepared. They must traverse the path toward emotional wholeness through denial, grieving, "working through", and a search for personal meaning in the midst of tragedy. Physicians and allied health care personnel must broaden their knowledge base and awareness of disability to include the emotional experience, even when this confronts them with their own fragility and vulnerability. There are lessons to be learned through tragedy and through vicarious "experiencing with" the patient. Through experiencing, we all emerge on the other side with a new understanding of our own illusions, and how they are as delicate as an eggshell — easily shattered and broken. Through tragedy comes wisdom, as daily we derive a renewed appreciation of our many gifts. The shattered illusions can become the motivation for self-growth and understanding, as summarized by Robert Burton over 300 years ago:

Deformities and imperfections of our bodies, as lameness, crookedness, deafness, blindness, be they innate or accidental, torture many men; yet this may comfort them that those imperfections of the body do not a whit blemish the soul, or hinder the operations of it, but rather help and much increase it!³²

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Jacksonville Medicine / May, 1998

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