The International Journal of Psychosocial Rehabilitation
 

Intimacy in People with Chronic Pain
 

Ellen Bral
Department of Nursing
Eastern New Mexico University
Portales, New Mexico 88130
E-mail: ellen.bral@enmu.edu

Michael F. Shaughnessy
Department of Educational Studies & Special Education
Eastern New Mexico University
Portales, New Mexico 88130
E-mail: michael.shaughnessy@enmu.edu

Russell Eisenman
Department of Psychology
University of Texas-Pan American
Edinburg, TX 78539-2999
E-mail: eisenman@panam.edu

Citation:
Bral E.,   Shaughnessy M., Eisenman R.(2002)  Intimacy in People with Chronic
Pain  International Journal of Psychosocial Rehabilitation. 6, 51-60



Abstract
One of the major problems of people with pain in a decrease in intimacy. Intimacy can be defined as a reciprocal relationship in which innermost thoughts and feelings are shared. This is different than nurturance, which implies one person being dependent on another. Intimacy is here conceived of as an egalitarian relationship. Nurses would seem especially well-trained to engage in intimacy-fostering interactions with patients. This can be especially helpful to pain patients, whose pain often results in others backing away from them, or in the person with pain withdrawing from others. The loss of intimacy is thus a further burden to the pain patient, in addition to the already negative realities of pain.


Background
Meeting the human need for intimacy is particularly difficult for people who experience chronic pain, whether or not that pain results from a terminal disease. In a classic study, LeShan [1] reported that persons with chronic pain live in a universe comparable to a nightmare where (a) terrible things are being done to the person and worse are threatened; (b) other people or forces are in control; and (c) there is no time limit, no predictable end. Studies of people with chronic pain support the aptness of this analogy. How, then, can someone who inhabits this alien universe of chronic pain begin and sustain intimate interpersonal relationships, whose essence is trusting self-disclosure to someone we expect will understand and accept us [2].

Discussion
Personal Experiences With Pain
The third author has undergone a major lifestyle change since becoming physically disabled with lumbar spinal stenosis and spondylosis. Not only hasdiagnosis and treatment often been inadequate, but when it occurs it is often limited only to the main disorder, and takes no account of the secondary physical symptoms which come from walking in an awkward fashion, or of the
psychological issues of depression and anxiety that a major disability brings [3]. Some do get good treatment for pain, especially if they go to a hospital where pain issues are paramount. For example, Comley and DeMeyer [4] found over 90% satisfaction with the pain treatment received at Baylor University Medical Center, which tries to follow the pain guidelines of the American Pain Society and of the Agency for Health Care Policy and Research. But most people probably do not receive adequate diagnosis or treatment for pain, so in the real world, pain treatment is often inadequate [5].

The Role of the Nurse
Nurses would seem to be especially suited to work with patients experiencing pain. Nurses are educated to "listen altruistically" [6]. Nurses are also educated for privileged intimacy governed by professional ethics. And how can someone with chronic pain endure life without interpersonal intimacy? The loss of interpersonal intimacy is a major lifestyle change, which most professionals never address. The nurse is in a position, based on the nature of the nurseís job and the skills possessed, to help pain patients, regarding problems of intimacy. The mutual exchange of ideas and feelings can result in a person feeling greater dignity and respect [7].

Intimacy
Intimacy can be distinguished from nurturance, which involves care taking and implies dependency. In contrast, intimacy is a reciprocal relationship through which one person wishes to know another's inner life and to share one's own [8] In Maslow's original hierarchy of human needs, intimacy can be seen as an aspect of the need for affiliation- to love and belong [9]. In Maslowís later revision of the hierarchy, intimacy can also be inferred as an aspect of the higher level need for growth [10].

Intimacy and self-disclosure have been seen to be an integral part of human psychological wellness according to Shaughnessy [11] and a major aspect of human growth and development according to Shakesby and Shaughnessy [12], and as part of the human experience. The quest for and celebration of, intimacy, is a major theme in classical and contemporary literature and the arts. Intimacy can include such areas as sexual or emotional, and they may stand alone as areas or are mixed together [13].

The human expression of intimacy is varied and complex, including bold behaviors as well as subtle nuances in speaking or being silent with another person, looking at or away from them, touching them during the ordinary routines of the day or the more intense times of romance and sexual passion. We have known for decades that infants who are not touched, fail to thrive and elderly people tell us how they miss being touched by cherished ones no longer alive, and by the people currently in their lives who only touch those fitting the youth-oriented cultural norms of beauty. Frankl [14] has indicated that "in the impersonal climate of industrial society, even more people obviously suffer from a sense of loneliness- the loneliness of the " lonely crowd". Understandably the intense wish emerges to compensate for this lack of warmth to compensate for it with closeness.

People cry for intimacy" (p.72) And when is this cry for intimacy most apparent? When people are suffering and are in relentless and unremitting pain. For some their pain is simply the day to day aches and stiffness in the joints. For others, it may be cancer and for others it may be on going migraine headaches and arthritis. In whatever scenario, people do not want to feel alone and isolated and lonely. They would prefer human contact and warmth and understanding andself disclosure. And what may be most horrible is not to have a person with which to share their pain and, for those who are dying, to have no one to share their last moments on this earth. Here is an example from Frankl [14]

" for half a year my very dear father was seriously ill with cancer. The last three months of his life he lived in my houseólooked after by my beloved wife and myself. What I really want to tell you is that those three months were the most blessed time in the lives of my wife and me. Being a doctor and a nurse , of course, we had the resources to cope with everything, but I shall never in my life forget all the evenings when I read him sentences from your book. He knew for three months that his illness was fatalÖbut he never had a complaint. Until his last evening I kept telling him how happy we were that we could experience this close contact for those last weeks, and how poor we would have been if he had just died from a heart attack lasting a few seconds. Now I have not only read about these things, I have experienced them, so I can only hope that I shall be able to meet fate in the same way my father did"
In this example, the father was able to share his last moments on earth surrounded by those who cared for him and loved it.

No Family, Just the Hospital Staff
Sadly, in our current society, with the breakdown of the family unit, individuals are not always surrounded by loving family members, but I.C.U. nurses and orderlies. And it is to these individuals that many people in pain turn. For example, the third author has been advised by his cardiologist to receive cardiac catheterization, as an assessment procedure to check for
possible problems. He has no family in the state that he can be with, or who can take him to or from the hospital. So, he will go to and from the hospital in a taxi, since he was told he cannot drive after the procedure. The only people he can turn to for support will be the hospital staff on duty when he undergoes the procedure.

Chronic Pain
The International Association of the Study of Pain defines pain as " an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage" [15]. Pain is generally classified on its physiological basis as nociceptive or neuropathic. But, practically speaking, we typically take the personís word for it: pain is
whenever a person reports being in pain.

Chronic pain is a major health problem affecting a large number of the U.S. population and literally millions around the globe. "Chronic" is defined as pain which persists over time, and experts differ in citing the amount of time, usually one to six or more months since the onset of pain, according to Bral [16]. The chronicity of pain is linked with the concept of suffering which
ncludes (a) threats to one's integrity, one's wholeness; (b) predominance of negative emotions such as fear; (c) overwhelming helplessness and decreased ability to cope, partly because resources are depleted by the very persistence of the pain; and (d) accumulated losses including appearance, way of life and quality of life [15].

The loss of intimacy is central to a decreased quality of life. There is no way of telling how much the diminished emotional support contributes to premature mortality.Those in the family become irritated by the constant complaining of pain from the family member. The spouse or significant other is constantly hearing about the type of pain, where the pain is occurring, and how they are attempting to cope with the pain. Some family or friends become desensitized to the pain, and consequently tend to ignore the person in pain and their requests for attention, or support or analgesics. Children often avoid parents in chronic
pain as they are no longer the loving, tender and nurturing individuals they once were, and may even vent their frustrations and anger on the children. They may be less able to tolerate noise, discomfort or even the presence of children.

One major and dismal consequence of living in a chronic pain universe is increased personal and social isolation which further decreases the potential for intimacy [17]. Chronic pain is often "invisible" to others. This leaves the person in chronic pain with a unique dilemma when attempting an intimate relationship: " How can I convey the realities of my pain to this other person without frightening them away, or trapping them with me in this universe of pain?" In addition, physical disability is a threat to the personís usual behaviors, including sex role behaviors. The sense of oneself as a man or a woman may be negatively impacted by pain or other disability, that makes usual life activities difficult or impossible [18].

Also, as with any disability, others may not know how to react. People sometimes fear that they might appear too solicitous if they offer help. On the other hand, they may also not know what to do to help, andfear seeming foolish if they offer help, or callous if they do not offer the right kind of help. So, the problem is resolved by avoiding the deviant person [19],in this case the person in pain.

Finally, chronic pain constrains the expression of intimacy in many activities including sex. Schlesinger [17] reporting on her in depth interviews with 28 women in chronic pain, elicited (a) client's and/or partner's fear's of increasing pain; (b) varying amounts of willingness to learn non-painful/less painful intimate behaviors; and (c) the "dampening " effects of chronic pain on sexual desire. Even something as rewarding as sex is not going to be seen as desirable if it always involves chronic pain, or if the chronic pain makes the person unable to funtion well in their sexual behavior.

Chronic pain can actually cause strife and feelings of frustration and exasperation in marital relationships as the management of pain becomes an all consuming issue. Spouses have to transport their loved ones to oncology centers for treatment, administer injections of drugs and they become surrogate nurses.Cundiff [20] has indicated that physicians are not often well trained in treating chronic pain, managing chronic pain, and that the efforts of well trained physicians are often thwarted by HMO's and hospital administrative procedures.

These barriers to effective pain management are experienced by enlightenedcompassionate physicians and nurses attempting to manage chronic pain whether it is due to cancer or a non malignant disease such as multiple sclerosis or arthritis. As noted by Bral [16], the most essential aspect of the medication regimen is to individualize it according to the changing needs of the patient.

The medications are broadly divided into categories : Opioids such as morphine and fentanyl, which act exclusively to relieve pain; and adjuvant drugs, which in addition to relieving pain, treat concurrent symptoms from the disease and/or the treatment itself. Examples of adjuvant drugs includeCorticosteroids which are used in the short term to decrease bone and
europathic pain, improve appetite and moodNSAIDS- Nonsteroidal anti-inflammatory drugs- such as ibuprofen ( e.g. Advil )
which relieve inflammation. Tricyclic antidepressants, such as amitriptyline ( e.g. Elavil ) given not in anti-depressant doses, but to relieve neuropathic pain characteristic of Multiple sclerosis and other diseases. Anticonvulsants , used to control neuropathic pain and to prevent migraine; Spasmolytic agents to control colicky pain.Others include : Antacids for gastritis and dyspepsia; anti-emetics for nausea and vomiting; anxiolytics for anxiety and hypnotics for insomnia that persists
after pain is relieved.

Cundiff [20] indicates that Corticosteroids, and nortriptyline are "helper pain" medications. Currently, Phenergan aids in the enhancement of Demerol and Visteral is another drug that assists. Cundriff [20] recommends Trilisate and Disalcid for cancer pain and AIDS and Dilaudid, Dolophine, and Duragesic for pain of moderate severity are often used in chronic pain cases. Although the patient may be drowsy and sleepy initially, this generally subsides. At a more fundamental level, many chronic pain patients have found that the caffeine in coffee assists with pain relief , particularly in conjunction with their medications.

There are several new developments in pain management. OXYCONTIN has been used with osteoarthritis pain, back pain, cancer pain and is appropriate when ATC (Around the Clock) pain management is imperative. This is available in 10, 20, 40, 80 and 160 mg dosages. In this world wide web age, there is even a web site entitled www.partnersagainstpain.com. There is also available at the American Academy of Pain Management website, http://www.aapainmanage.org. Opioids may also be effective in pain management, according to work at the Johns Hopkins Pain Treatment Center, which seems to indicate that
opioids allow for improved daily activities and functioning.

Khatami [21] has investigated the use of logotherapeutic procedures for those in chronic pain. Whiddon [22] has offered new hope for people in chronic pain. His work focuses on the fact that people in chronic pain lose meaning in life and in the very things that may make life meaningful for them-interpsonal relations, hobbies, work, and their lives.

By helping clients to maximize their interests, aspirations, and relationships many clients and patients recover new hope and overcome discouragement. Individuals who are living in chronic pain need assistance in optimizing their pain free periods, be they morning, afternoon or evening, and coping with those periods when the pain is most intense. They need to be taught coping skills, to manage not only the psychological trauma of chronic pain but use available strategies such as the application of heat, or cold or ice to deal with the immediacy of pain, available themselves of hot tubs, whirlpools and the like and employ heat, or heating pads or Capsaicin or ice or whatever other natural options are open to them. Individuals should seek out those mutually enjoyable activities which bring the greatest degree of pleasure and enjoyment. This may involve eating out, movies, television, listening to music or reading. Alternative attempts at intimate communication can be attempted. A note, a card or a brief comment may be what is needed to assist individuals in their intimate attempts at communication.

Communication via the world wide web may be better for some individuals since one does not have to see the shrunken body of friends and cope with the odors of hospital rooms and corridors. Distraction, hypnosis and biofeedback are all alternative approaches to pain management, and may enable individuals to share some intimate moments with loved ones. Reading has been found by some to alleviate or act as a distracting agent. A comfortable chair may also facilitate pain management.
 
 

The Nurse and the Person in Chronic Pain
Nurses are accurately acknowledged as the health care providers who have the most frequent and on going contact with people who become patients. Nurses are educated to listen altruistically [2]. They are also educated for privileged intimacy and function as the cornerstone of pain management [23]. What are the implications of these facts for nurses whose enlightened compassion enables them to recognize the need for intimacy in persons who live in the nightmare universe of chronic pain?
Nurses are the health care providers who may interact with patients with the most intense pain, and the most chronic pain. Further, they are the professionals who may be most available when patients are at their most vulnerable and at a time when those patients most need to share their innermost thoughts and feelings. Intimacy may be an important part of the therapeutic
relationship. Indeed, intimate sharing of thoughts, and feelings and memories may serve as a distraction or even as a meaningful experience.

Nurses are frequently the last persons that people near death are going to encounter. Geriatric patients may have outlived their children or siblings. Asterminally ill patients who are in chronic pain enter the last stages of theirlives and engage in a review of their lives, the nurse is often the last personwho is available to share oneís thoughts, feelings and emotions with. The nurse
is in a singular position as a fellow human being who cares about mankind and who has experienced life, suffering and hopefully meaning.

Nurses may become quite exasperated or frustrated with the on going painexperiences of their patients that do not seem to respond to palliative doses ofmedication, or when physicians do not seem to respond to the cries for help fromtheir patients. Even more exasperating may be the utterances of suicidalideation, requests to "end it all" and free them from the agonizing pain thatthey are experiencing. As chronic pain patients approach death, their desires to share thoughts about their lives, their loved ones and their families come to the fore. Nurses must recognize that this desire is a wish to bring closure to their lives. If no
family members are around, or if family members have predeceased them, nurses may be the only compassionate caring individuals available. Some nurses may be uncomfortable in this role, as patients reflect on what they have done right or
wrong, or the mistakes that they have made or their fears about meeting theirmaker or God. They may express anger toward relatives and family members or toward their doctors and hospitals.

Can the Sharing of Pain be Meaningful?
The discussion of oneís pain can indeed provide nursing and medicalpractitioners with subjective and objective data regarding the titration ofmedication and the appropriateness of medication. If by administering an analgesic, the patient has experienced some relief from their suffering the nurse has performed a meaningful act. The two have shared an existential moment. Physicians need to be aware of the all consuming nature of pain, and the subjective nature of pain and of the fact that many individualís pain varies depending upon the time of day, and other salient factors. If an individual has helped another individual manage their pain, cope with their pain or distract them from their pain, they truly have performed a meaningful act.

Nurses and physicians who enter the nightmare world of the person in chronic pain do so to alleviate the patientís immediate suffering and to learn what may help other patients. To this encounter, professional caregivers must bring not only clinical competence but the human compassion which is the hallmark of an authentic self.

The caregiverís expertise and the humanity must be clearly evident to the patient in pain, who, because of his or her suffering is in a state of greatly heightened vulnerability, yet needs to participate as fully as possible in the experience. Only by being authentically present to thepatient can the professional caregiver bridge the chasm between the world of health and the nightmare world of chronic pain. This has to do with being authentic when the nurse enters the world of that person in chronic pain. Being an authentic presence, human to human, rather than nurse to patient, whether or not the nurse has a pain medication to deliver at that moment is critically important.

The nurse must genuinely encounter that person in their terrifying nightmare world of unrelenting, pain After assessing the patientís needs for pain management, with input from the patient and determining how to effectively meet those needs, the caregiver must ensure that the needs are met promptly. This is essential for the integrity of the patient and the caregiver , and is the core of a genuine therapeutic relationship in clinical practice. Within that context, the actual treatments to mitigate pain, medications or non-pharmacological modalities such as relaxation techniques, massage, guided imagery- may be augmented.

Summary
This paper has attempted to investigate two realms: that of the physical, which encompasses pain, and that of the emotional, which encompasses the need for intimacy. Critical care nurses, and nurses in general, are in a crucial position to provide support and help patients to procure an intimate emotional relationship with a caretaker who may soon see them depart from this world.

While nurses are typically trained in pain management, they are not oftentrained to help patients meet their emotional needs in extremis, at the point ofdeath.


References

[1] LeShan, L. (1964) The world of the person in severe pain of long duration. J Chron Disease. 17: 119-126.

[2] Kadner, K. (1994) Therapeutic intimacy in nursing. J Advanced Nurs 19 (2): 215-18, 225.

[3] Eisenman, R. (2001). Pain and disability: The personal experiences of a clinical psychologist. Int J Psychosoc Rehab 6: 33-37. On world wide web at: http://www.psychosocial.com/current_2002/pain.html

[4] Comley, A. L. & DeMeyer, E. (2001). Assessing patient satisfaction with pain management through a continuous quality improvement effort. J Pain Symptom Manage, 21: 27-40.

[5] Eisenman, R. (in press). Inadequate treatment of pain: Realities in the everyday world. J Pain Sympton Manage

[6] Kadner, K. (1994) Therapeutic intimacy in nursing. J Advanced Nurs 19 (2): 215-18, 225.

[7] Schaffer, J. P. (1999). A humanistic approach to mediation. Humanistic Psychol 27: 213-220.

[8] Rubin, L.B. (1983) Intimate strangers: Men and women together. New York: Harper and Row.

[9] Maslow, A. (1954) Motivation and personality. New York: Harper

[10] Maslow, A. (1971) The farther reaches of human nature. New York: Viking Press.

[11] Shaughnessy, M.F. (1986) Intimacy and Self Disclosure: Keys to Personal Wellness. Journal Individ Family Commun Wellness 3 (4): 3-11.

[12] Shakesby, P.,& Shaughnessy, M.F. (1992) Adolescent sexual and emotional intimacy. Adoles 27: 106, 164-170.

[13] Shaughnessy, M. (1995) Sexual Intimacy and Emotional Intimacy. Sexological Rev 3(1): 81-94.

[14] Frankl, V.E. (1978) The unheard cry for meaning. New York: Simon & Schuster.

[15] Chapman, C.R. & Gavin, J (1993) Suffering and itís relationship to pain. J Palliative Care, 9(2):5-11.

[16] Bral, E.E. (1998) Caring for adults with chronic cancer pain. Amer J Nurs 98 (4): 27-32.

[17] Schlesinger, L. (1996) Chronic pain, intimacy and sexuality: A qualitative study of women who live with pain. J Sex Res 33 (3): 249-256.

[18] Marini, I. (2001). Cross cultural counseling issues of males who sustain a disability. J Appl Rehab Counsel 32: 36-44.

[19] Eisenman, R. (1991). From crime to creativity: Psychological and social factors in deviance. Dubuque, IA: Kendall/Hunt.

[20] Cundiff,D. (1992) Euthanasia is not the answer: A hospice physician's view. Totowa, New Jersey: Humana Press.

[21] Khatami, M. (1987) Logotherapy for chronic pain. Int Forum Logotherapy 10 (2): 85-91.

[22] Whiddon, M.F. (1985) New hope for people in chronic pain.

Int Forum Logotherapy 8 (2): 76-81.

[23] Ferrell,B.R.(1998) Advocating for better pain management. Paper presented at the 6th Annual Pain Management Conference. American Society of Pain ManagementIntermountain West Chapter, University of Utah.

[24] Stefanics C. (1989) Logotherapy and nursing practice. International Forum for logotherapy 12, 2, 97-99.

List of Abbreviations Used--mg for milligrams
Declaration of competing interests---None reported



Copyright © 2002, Southern Development Group, S.A.  All Rights Reserved.
A Private Non-Profit Agency for the good of all, published in the UK & Honduras