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FOCUSupplement On HIV Antibody Test Counseling Volume 14 Number 5 June 1999

Loss, Grief, and HIV Test Counseling Jd Benson, MFCC Loss can affect the emotional state of an individual and consequently his or her behavior. Whether or not someone has grieved a loss and how he or she has grieved the loss can directly relate to risktaking behavior. When a person avoids the grieving process, he or she may lose perspective about the harm of various behaviors and be susceptible to engaging in HIV risk behaviors. In addition, counselors who themselves have experienced loss and do not allow themselves to grieve can sacrifice objectivity in counseling. This issue of the FOCUS Supplement looks at the subject of loss, how it affects clients’ lives, how HIV test counselors can assess and respond to clients’ issues of loss, and how issues of loss personally affect counselors.

Types of Loss

Author Jd Benson, MFCC is Senior Trainer at the UCSF AIDS Health Project.

Death—for instance of a partner, friend, relative, or pet—is often the event people most closely identify with loss. The experience of loss, however, is not limited to death: it may arise from the relinquishing of friendships, custody of children, employment, material items, and social standing. Loss may also occur when a person ends school, moves away from a family home, leaves jail or prison, experiences illness, or stops using alcohol or other drugs. Beyond this, the anticipation of any of these events may lead to the experience of loss. While some losses occur over extended periods, such as the gradual loss of one’s peer group when a person stops using drugs, other losses occur in relatively short periods of time.

Multiple loss describes the experience of loss that occurs repeatedly in a compressed period, depleting a person’s inner

reserves. For instance, the death of several friends or the loss of a job combined with the loss of a relationship can be particularly difficult, because a person may have not been able to adequately recover from previous losses.

Responses to Loss Loss provokes a variety of emotional responses that can destabilize a person’s sense of well-being or security. In response to loss, a person may feel vulnerable or confused about his or her identity or life purpose, and may experience damaged self-esteem. Depending on the magnitude of these responses and a person’s coping skills, emotional responses to loss can lead to a variety of behaviors.

Mental health professionals see behaviors such as crying, seeking increased emotional support from others, and time spent reflecting as generally healthy responses to loss that facilitate an active grieving process. This grieving process can gradually lead a person toward a “resolution” or coming to terms with loss.

Resolution involves expressing emotions attached to the loss sufficiently enough to return to a more balanced emotional and behavioral state. For example, grief may be marked by attention deficits, sleep disorders, and bouts of emotional outbursts such as crying when a memory or event triggers the loss. While grief may never be completely resolved, a person can achieve a state of relatively normal functioning.

Other responses to loss may not lead to resolution and may be harmful. For example, in response to loss, people commonly use alcohol or other drugs as a way of self-medicating painful feelings, rather than seeking appropriate psychological or medical treatment through a physician or counselor. Such self-medication is common and acceptable behavior in movies, television, and advertisements, in which contexts people use substances as a way

of coping with stress, sadness, anger, fear, anxiety, and other emotions. Illicit drugs and alcohol generally tend to be more potent than appropriately prescribed medications and result in more extreme emotional states rather than balanced ones. Such “quick fixes” can serve to suppress emotions for long periods of time, many years, or even a lifetime. To keep feelings suppressed, a person’s physiological “tolerance” for a substance may change, requiring additional substance use to achieve to the “desired” state of numbing.

It is important to note that anyone—not just those with addictive histories—may seek to deal with losses through substance use. In addition, alcohol or drug use in response to one loss may develop into a coping style or pattern for dealing with any future difficult feelings or situations. This response, rather than resolving each loss as it presents itself, only compounds losses, creating pent-up emotion and despair.

Unexpressed feelings can lead to extreme states such as despair, and as a result, some people may be more likely to engage in sexual behavior. A person seeking support and affection to deal with loss may also seek sex, and may be less able to assert his or her needs to engage in safer forms of sex or injection drug use. A client who has lost friends or partners in the epidemic may feel there is no hope for escape from HIV infection. He or she may feel powerless to make changes that could decrease the chances of becoming infected. Multiple losses, in particular, can overwhelm a person’s coping mechanisms and result in despair; drug and alcohol use can accelerate this process.

Counselors must be careful not to be equally overwhelmed by circumstances in a client’s life when a client is in despair.

If a client’s pattern is to avoid dealing with losses in a constructive way, he or she will bring that to the counseling session. Therefore, since changing from unsafe HIV risk behaviors to safer practices may represent a loss, a client may respond either by not changing the behavior or by coping with the change in the manner he or she has tended to in the past: by actively engaging and resolving loses or by using less effective defense mechanisms such as substance use or denial.

In some cultures, grieving for 6 months is too long and in other cultures, grieving less than 5 years is considered a great offense. Grieving 3 FOCUSupplement Mon 98

is an individual process often impacted by cultural norms. If a client appears depressed or reports behavior that may suggest depression, and these have been ongoing for a period of three or more months, it may be useful for the client to see a trained mental health counselor for evaluation. Grief may be complicated by other psychological or biochemical factors that can be best addressed with professional help. The best thing an HIV test counselor can do is acknowledge the circumstances the client faces, point out his or her concern and link the client to an appropriate resource.

Assessing and Working with Grief and Loss Assessing whether clients have experienced significant losses and whether or not they have grieved such losses is important to understanding the circumstances or context within which the client either engages in or may engage in risk activity. Yet performing such an assessment does not directly fit into the bounds of the risk assessment data collection tool.

There are different ways of gathering this information and different cues counselors can look for to determine if this line of inquiry is appropriate. Some clients will offer the information directly by stating, for example, that someone close to them has recently died or that a friend who was “clean and sober” has returned to using. On occasions when a

Call for Submissions The FOCUS Supplement on HIV Antibody Test Counseling encourages HIV test counselors to submit proposals for articles. Among the topics that would be appropriate for Supplement articles are: counseling methods, current issues in HIV test counseling, and day-to-day counseling challenges.

Proposals should include a summary of the idea and an outline of the article. Please send to: Associate Editor FOCUS Supplement UCSF AIDS Health Project, Box 0884 San Francisco, CA 94143-0884 By e-mail: john_tighe@QUICKMAIL.ucsf.edu

client does not directly disclose losses, inquire about stressors a client may be facing and ask about any dramatic changes or losses the person has experienced. In addition, look for non-verbal cues, for example, crying or an especially withdrawn affect, or ambiguous verbal cues, for example, when a client states he or she no longer has anyone with whom to talk.

To address the range of issues related to loss, counselors should begin by validating the client’s sense of loss. This gives the client the opportunity to be “heard,” building his or her trust in the counselor.

Next, counselors need to learn how clients are dealing with a particular loss and how they have dealt with losses in the past, respecting and uncovering each client’s individual ways of coping. During this process, counselors must recognize their limited role and first work with the client’s sense of loss only as it relates to the his or her risk behaviors and priorities for the session, and then provide referrals for additional services.

When a client describes coping mechanisms that put him or her at risk for HIV infection or other dangers, the counselor should learn more about the extent to which the client seeks to avoid risky behaviors and explore any contradictions.

For example, if a client has stated that he wishes to remain uninfected yet reports that he takes sexual risks when he thinks of his best friend who has died, the counselor can point out this contradiction. In doing this, the client may be able to recognize the contradiction and begin to address the problem with the counselor. If the client denies that there is a contradiction between his desires and behaviors, this may indicate something about the client’s level of denial. Later in the session, the counselor may return to this point and reiterate his or her concern about the client’s risk behaviors, learn if the client is interested in receiving support services to change behaviors, and provide a referral source.

Counselors should also assess the extent to which clients relate feelings and experiences of loss to behaviors, particularly HIV risk behaviors. Counselors can point out that loss can be destabilizing and that it can leave a person vulnerable to engaging in harmful behaviors as a way to cope. It may also be helpful for counselors to explain the grieving process and the value of resolving loss.

If a client is coping well now, but historically has not dealt well with loss, the

counselor should validate the client’s healthy response and aid him or her in recognizing the internal and external resources he or she is using to deal with loss. When a client discloses a history of responding to loss by engaging in harmful behaviors, the counselor should explore this further, working with the client to consider the possibility of different strategies to respond to loss now, developing productive coping strategies, and identifying ways to implement them. If the client seems unable to recognize the danger of behaviors that relate to loss,, the counselor may try to refer the client for additional support.

Because the counselor’s ability to pursue any of these issues is limited by the scope of the counselor-client relationship, further exploration of loss and grieving should be left to such referrals. Many people, even those who appear to be doing well with their grieving, can benefit from support. Counselors should assess a client’s support system in terms of grief, comment upon the benefit many people find from sharing their losses in a constructive setting, and when available, link clients to an appropriate group or individual counseling referral.

The Counselor’s Experience of Loss Counselors experience their own losses working with HIV. They experience loss every time they give a positive result, and every time a client leaves the counseling session to return to a challenging or risky environment. Often the press of daily activity pushes the counselor to fail to attend to his or her own losses or to underestimate the power of these losses.

Many HIV counselors are overly deferential to the “real” losses experienced by others, such as colleagues living with AIDS. This deference is a tool of denial, by which counselors can avoid considering their own losses. The result can be a build-up of loss that adversely affects the counselor just as it does clients.

Counselors who have been doing direct service work for many years are especially prone to feeling hopelessness. For example, “veterans” of the epidemic may experience increased hopelessness when people who are “newer” to the epidemic and unaware of its ravages dismiss prevention messages. With the current success of new treatments in sustaining the health of many people, the visibility of AIDS has been diminished for young people and others who have not witnessed the epidemic unfold over the course of 4 FOCUSupplement Mon 98

years.

Frustration and anger may mask a deeper sense of hopelessness and despair that can interfere with daily functioning, adversely affecting counseling and a counselor’s personal life and choices. At the same time, counselors, like clients, may come to feel that AIDS is less life-threatening. The resulting decreased fear of the impact of HIV infection may make room for counselors to have other feelings, such as sadness at the many friends and clients who have been infected and who have become ill or died. In the case of counselors who are HIV-infected, complex feelings may emerge. The counselor’s experience with HIV treatments may affect his or her approach to counseling and his or her ability to recognize a client’s loss and grief. Counselors must remain aware of their own emotional responses to loss in order to avoid bringing a distorted response to loss to the counseling session.

Counselors may be especially susceptible to anticipatory loss. For instance, counselors who have been working in the epidemic for several years may be affected by previous news of “treatment break-

throughs” and may be skeptical about the long-term success of current treatments.

They may ask themselves questions such as, “When are these new treatments going to begin to fail, even for those for whom they are helping today?” It would be unreasonable for counselors not to have these thoughts and unhealthy to deny them, and such thoughts may indicate unresolved grief over past treatment disappointments and related losses.

Another source of counselor loss occurs when the counselor comes to feel that he or she cannot help clients alter and reduce HIV risk behaviors, particularly when he or she is seeing new “waves” of people infected or at risk. While urban gay male communities have come together to provide support, some counselors may be frustrated by the response in heterosexually identified substance abuse and recovery communities. In response to all of these situations, counselors should talk productively among themselves and in structured supervision sessions to remain aware of their own responses to loss, acknowledge anticipatory loss, recognize the importance of shifts in the epidemic, keep clear of their role in the prevention

5 FOCUSupplement June 99

FOCUS Supplement

On HIV Antibody Test Counseling

Executive Editor; Director, AIDS Health Project James W. Dilley, MD Editor Robert Marks Associate Editor John Tighe Assistant Editor Alex Chase Contributing Clinical Editor Jd Benson, MFCC Founding Editor; Advisor Michael Helquist Medical Advisor Stephen Follansbee, MD Design Saul Rosenfield Production Shauna O’Donnell Kelly Costa Circulation Shauna O’Donnell Esther Curiel Interns Laura Meyers Rahim Rahemtulla

FOCUS Supplement On HIV Antibody Test Counseling is a quarterly supplement to FOCUS: A Guide to AIDS Research and Counseling, both published by the AIDS Health Project, which is affiliated with the University of California San Francisco.

The Supplement is published six times a year and is distributed to HIV counseling and testing sites in California. © 1999 UC Regents. Permission to reprint any part of the Supplement is granted, provided acknowledgement of FOCUS and the FOCUS Supplement is included.

Address correspondence to: FOCUS, UCSF AIDS Health Project, Box 0884, San Francisco, CA 941430884; (415) 476-6430.

ISSN 1047-0719

1 FOCUSupplement Mon 98

Stopping Substance Use: Loss and Sexual Risk Taking Stopping or making changes in substance-using patterns can involve significant loss, including the loss of a way of life, a perspective of reality, and the ability to self-medicate to deal with other life losses. This loss can affect a person’s risktaking behavior.

Many people in recovery from substance abuse report that they have never had sex without using alcohol or other drugs. Substance use may have masked feelings, for instance shame related to being sexual, conflict about sexual orientation, or emotional pain related to earlier sexual abuse. For these and other reasons, a client may have viewed sex with his or her partner as unpleasant and may have used substances to feel less inhibited. A person may also have had sex under the influence of drugs to avoid dealing with physiological problems related to sex, such as being unable to have an orgasm. For a person entering recovery, the concept of negotiating safer sex may be new.

Safer Sex and Recovery In the first year of recovery or abstinence, substance abuse treatment providers and many people in 12-step programs suggest that a person avoid new sexual or sexual-emotional relationships.

For people who experience not having sex as particularly challenging, and for whom sex without drugs has not been the norm, the potential for a shaky sobriety or for being sexually impulsive may be increased. By making impulsive decisions to have sex, a person may also limit attention to safer sex practices.

HIV test counselors must be sensitive to the layers of loss clients in recovery may experience. A counselor should inquire about the role of sex in a person’s life and how it has related to substance use, at what point he or she is in the recovery process, and what activities and support have helped him or her in recovery and in achieving or maintaining sobriety. The

counselor should further assess if the client continues to access these activities and sources of support, and support him or her to continue to utilize resources that have been helpful. When clients disclose challenges to being sexual during recovery, counselors should validate client concerns and seek to normalize them by stating that such dilemmas are not uncommon.

As clients become aware of and discuss difficulties related to sexual expression, they may see the recovery process as more detrimental than beneficial. The counselor should validate the client’s struggles, and ask the client to consider the benefits of not abusing substances and remember some of the harms of abusing substances. The counselor should be aware that a day of sobriety is no small matter, that the process of seeking to live life “one day at a time” is vital to recovery, and that recovery is a complex process.

The Need for Ongoing Support Ongoing support is important for someone who has a substance abuse history not only to deal with the prospect of returning to substance use, but also to deal with feelings and other aspects of life that become “uncovered” as a result of not using substances. These feelings, if not dealt with, can lead a person to return to substance use. Part of the recovery process is about learning how to grieve and do so regarding past unattended losses as well as facing new losses. Naming the loss and the need to grieve and supporting the grieving process are important interventions that can help clients see that something very powerful is at play.

Counselors can refer clients to substance abuse counselors who can provide further support, place the dilemma in context, and help develop skills to deal with various forms of grief and loss that may emerge. It can be useful, if it seems appropriate to the client’s circumstance, for counselors to acknowledge that losses may be affecting behavioral choices and to help the client discuss these issues further with his or her treatment or recovery counselor or other counseling resource.

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