A Social Link Production (1998)

from a Psychological Perspective

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A Borromean Knot Philosophy

            From certain perspectives, it seems relatively easy to talk about HIV/AIDS. It seems in some way that we could understand a lot about HIV as a virus, and about AIDS as its physical, biological consequence. And with only a little larger stretch of the imagination, it seems that we could talk about AIDS from a strictly social perspective: HIV has produced a plague. The working of a plague on a community also seems to be a relatively discrete social question for study. But clinical psychology of HIV/AIDS can in no way pretend to be studied independent of both of these dimensions. This Borromean linkage, the one that governs this web site, is especially important for understanding the psychological dimensions of HIV/AIDS. It would be preferable if the social work reader would come to this page after having read the biological and the sociological perspectives.

Denial and the Clinician:
Living with the assumption that the pandemic may affect anyone.
Since Freud’s discovery of the mechanisms of psychic defense, it has become clear that denial is a common reaction to trauma. Surely HIV/AIDS is the sort of trauma that can easily lead anyone to keep his or her eyes closed to the problem. This includes clinicians. Given the immense proliferation of persons living with HIV/AIDS, caused in part by the very success of new treatments, clinicians will find themselves facing the questions raised by this disease in many of their therapeutic relationships. The clients who one meets that are obviously already trying to cope with an HIV infection only make up the tip of the proverbial iceberg. So even before one learns that one is dealing with someone who is infected, the clinician must learn to raise the possibility that the client has a reason to talk about HIV/AIDS. In the more obvious sense, perhaps the client belongs to an at risk population. Are they intravenous drug users? Have they had unprotected sex? Do they need to be counseled about testing or educated about precautions? But even more distant concerns need to be probed. Have they lost someone close who died of AIDS? Has the fear of HIV/AIDS made their assumption of a sexual orientation difficult? Does the client belong to the "worried well?" In short, clinicians of all stripes, from rural to inner city communities, must learn to assume that the pandemic of HIV/AIDS may affect anyone. Clinicians must struggle against the collusion of silence.
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Assessment as an opportunity for education

        Aside from helping the client to a realistic personal plan of action in regard to HIV/AIDS, assessment provides an important opportunity for educating clients about the HIV virus. This presumes that the clinician has taken the trouble to inform herself about what the HIV virus is and how it is transmitted. There are many sources for such information. It is imperative that the clinician consults such a source periodically in order to keep up-to-date. Moreover, the clinician must be willing to pursue these topics without prudery. We may hope that everyone understands the general rudiments: unprotected sex and intravenous drug use are the most likely forms of transmission. The clinician should not stop with this outline for prevention. She must be able to address the varieties and ingredients of sexual contact and risk (vaginal intercourse, anal intercourse, oral sex, condoms, dental dams, rimming, etc.) She must also be able to address the simple, cheap and effective forms of needle cleaning. It may seem ideal to dissuade clients from using needles or having multiple sex partners, but in light of the dire consequences of HIV infection, and the realities of sexual desire and addiction, the clinician must be able to recommend strategies of harm reduction.

Assessment as intervention: the importance of HIV testing

One of the many other faces of denial that has been directed at the disease has been the unwillingness to be tested. Although a reliable test has been available since the mid-1980’s, with more exact tests being developed since, many have in fact avoided being tested. From a social perspective, for the sake of preventing further transmission it may always have made sense to encourage clients to take stock of their HIV risk and to test for it if appropriate. But in those days, when an AIDS diagnosis carried with it little prospect for hope and much danger of ostracism, some clients may understandably have preferred not to have their HIV status confirmed.  If the client was willing to live "as if," perhaps then it was ethically acceptable for the clinician to limit herself somewhat to educating the client on prevention. Given the growth of treatment options this is no longer true. Because timing and compliance are so crucial for successful treatment by combination therapies, the clinician must pursue the assessment of risk and encourage testing. Anonymous testing centers are available in almost every geographic locality in the United States. Learn where yours are.

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Adjustment and mental health

HIV/AIDS is a chronic and life-threatening illness. Adjusting to the illness is a life-long process. It seems unnecessarily pathologizing to see news of HIV/AIDS as inevitably producing this diagnosis, but something like an adjustment disorder must be anticipated almost always. After testing seropositive, individuals must address a number of issues common to those suffering from a chronic, life-threatening illness. How shall one live the “rest” of a life? How shall one pay staggering medical expenses? What shall one do in the face of the likelihood of death. Moreover, the discovery of infection precipitates many of the emotional dilemmas described for such illnesses. Shock, anger, denial, guilt and anxiety are just some of the emotions one must expect. However there are also a number of questions specific to this particular illness: Shall one disclose one’s serostatus to others? How shall one face the immediate and practical worries of stigmatization, e.g. the possible abandonment of social circle, the possible loss of work? Consequently, although the high rates of attempted suicide upon discovery of seroconversion -- predicted earlier in the history of the disease -- have not developed, adjustment to HIV/AIDS is never easy. Persons who are young, undereducated, unemployed, make heavy use of avoidance coping, or perceive themselves as having a low level of social support are particularly vulnerable.
The most prevalent other clinical conditions associated with HIV infection from a mental health perspective are anxiety syndromes, mood disorders, psychotic disorders and substance use disorders. Studies show that each of these enters the HIV/AIDS picture in different ways.

Anxiety Syndromes:

As one would expect, studies have shown that, among seropositive individuals, there is a higher rate of that anxiety described by the DSM-IV as Generalized Anxiety Disorder.
In fact studies have also shown that more than 40% of both seronegative and seropositive homosexual men report episodes of clinical anxiety lasting from one to several months, with the majority of onsets being related to seroconversions or commencing after the advent of the AIDS pandemic. In other words, it has been suggested that the very existence of HIV/AIDS is responsible for a significant rise in prevalence rates for clinically diagnosable persistent anxiety.
Remarkably, a number of studies have shown that the rates of other major anxiety disorders (panic disorder, obsessive compulsive disorder) do not appear to be markedly above community standards in HIV seropositive individuals, even though HIV can be the manifest content of these conditions.
In its clinical dimensions, there is a significant decrease in anxiety reported with both psychotherapy and psychopharmacology.

Mood Disorders
Rates of current major depression are about twice the average for seropositive individuals. It should be noted that this puts HIV/AIDS in the range found for other chronic medical illnesses. In hospitalized HIV patients, as with non-HIV hospitalized patients, rates are much higher and may approach 40%. It is important to note that the somatic and neurologic symptoms may complicate a differential diagnosis in more advanced HIV patients. For them, the clinician should focus for differential diagnosis on saddened mood, distinct loss of pleasure or interest and feelings of worthlessness. Suicidality, especially in patients with advanced AIDS who are not responding to combination therapy, poses a special problem for the clinician. It is recommended that clinician pose herself the question of human dignity versus human life. In any case, suicidality based on a sense of failure or sinfulness should be seen as a diagnostic indicator.
Major depression is sometimes accompanied by disturbances of higher cognitive functions, including memory and concentration.  Evidence suggests that such complaints are just as likely to be neurologically based, associated for example with AIDS-related dementia.  Common mental status examinations are relatively insensitive to neurological impairment; clinicians should refer patients to experts for neurological testing.  Barring neurological sources, the symptoms of depression respond significantly to both psychotherapy and psychopharmacology.
“Secondary” mania (an organic mood disorder related to some neurological diseases, e.g. meningitis or to pharmacological interventions such as AZT) may appear in HIV illness.  Its treatment is often palliative pharmacology. Otherwise mania does not appear to be appreciably more common for persons with HIV.

 Psychotic Disorders 
With the following significant exception, psychotic disorders are not particularly prominent among people with HIV/AIDS.  Full-blown psychosis may appear in late stages of AIDS with a prevalence rate of up to 5%.  Loosening of associations, hallucinations and even elaborate delusions are common.  The diagnosis of such persons is complicated by prominent disturbances of mood.  Moreover, the emergence of psychotic symptoms is prognostic of death within the succeeding year.
The fear of this condition, far from universal, but well know in the HIV/AIDS community, is itself a significant source of depression and anxiety. Psychosis associated with HIV infection is more responsive to neuroleptic treatment than to psychotherapy.

 Substance Use Disorders

Most substance use disorders among seropositive individuals commence long before infection.  Nevertheless it is even more significant that these disorders are addressed in people with HIV where it may lead to noncompliance with medical regimens.  The common forms of combination therapy involve complex regimens, with special dietary and timing constraints.  It is encouraging to note that the stress of HIV/AIDS does not appear to increase rates of developing a substance use disorder.  In fact, for many the discovery of seroconversion brings about a healthier lifestyle.
With regard to the seronegative community, it is important to note that drugs and alcohol may also impair judgment, lead to impulsive behavior, or otherwise increase the risk of HIV acquisition and transmission. That means it is important for the clinician to understand the risks of HIV infection when treating persons with substance use disorders. Special emphasis must be placed on the direct role of shared needles in the spread of HIV/AIDS. (See the Biology page.)

HIV-Associated Dementia (HAD), a.k.a. AIDS-Related Dementia (ARD)

HIV can cross the blood-brain barrier and enter the central nervous system through virus-infected macrophages. Hence a significant proportion of HIV-infected persons will develop this neurologically based cognitive disorder. For some that will entail subtle impairments in cognitive function (attention deficits, slower processing of information.) Less commonly, and specifically with frank AIDS, some will develop more pronounced cognitive deficits (including linguistic disturbances and psychomotor slowing.) Some patients with this dementia become severely withdrawn and uncommunicative. Occasionally, this dementia progresses to psychosis and delirium. Since the advent of early treatment of AZT, an antiviral which apparently succeeds in crossing the blood-brain barrier, there has been a significant decrease in this most extreme form of ARD. Milder forms of HAD can be ameliorated by compensatory skills training. Anecdotally, central nervous stimulants such as Ritalin can be helpful. It is important for clinicians to work closely with psychiatrists to coordinate care.

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The Dialectic of Optimism and Pessimism
 & the
 Post AIDS Survivor Syndrome
Protease inhibitors in particular and combination therapies in general have brought dramatic health improvements to persons with HIV/AIDS.  Clinicians have consequently expected to see an equally dramatic improvement in HIV impacted persons with regard to their feelings of hopelessness and depression.  After the now-famous Vancouver conference, therapists of all sorts began to notice a curious pattern.  The clinical manifestations included an initial phase of excitement and hope, but then as patients began to deal with the psychological changes involved in planning a future rather than a funeral, many began (unconsciously or not) to become non compliant with their medications.  Clinicians must take note of the psychological, social, and existential changes that occur during this shift in identity.  People "stabilized" on combination therapy fear losing support, losing disability income, having to possibly reenter the work force (after having not worked and losing job skills)etc..
It is difficult to say just how this syndrome will develop, and it has not yet attained a DSM acceptance.  Surely its future depends very much on how HIV/AIDS treatments as a whole develop.  But it is clear that survivor groups on the topic could both chronicle and contribute to the what-is-yet-to-come of  the Post AIDS Survivor Syndrome story.  We must make an effort to recognize not only the needs of the HIV/AIDS patient, but also of the not yet known needs of what may come if there ever is a post-AIDS day.

Countertransference and HIV/AIDS
Care for persons with a catastrophic illness such as HIV/AIDS carries a lot of potential for overwhelming a caregiver. Of course, social workers and the like are trained in helping others cope. But in the case of a disease such as AIDS, morally and mortally charged, there are some obvious countertransferential traps looming.
Therapists, like most others, may harbor unexamined fears of being exposed to HIV and contracting AIDS. They may also harbor unexamined prejudices against the populations that, for the moment, represent the typical affected individuals. But, more subtle issues will certainly trouble even the fearless and unprejudiced. Caregivers may experience discomfort with the patient’s sense of anguish or helplessness. Or they may have difficulty addressing issues of death and dying directly with the patient. Some may experience concern over the use of “unauthorized” drugs, such as marijuana, which seems to provide so many from relief from the nausea common to combination therapy.
In general, one can anticipate that there will be a tendency for the therapist to create distance from the patient because of the discomfort of facing the potential loss of the person through death or serious illness.

Dignity, Therapy, Spirituality
 In the extreme we are limited by these markers; we are born and we die.  But is our own birth really something that preoccupies us in the way that our own death does? Yes there is also love, but assuming there are some who live without love, in the words of a poetic philosopher, death is the "community of those who have nothing else in common."   It is a least common denominator of being human.
That doesn't mean humanity, on the whole, hasn't found a certain amount of acceptance when it comes to death. But with HIV/AIDS the challenge of grieving losses is often complicated.  Therapy with such person's calls upon our openest sentiments towards the sources of hope with which people try to maintain their dignity.
Spirituality is one of the oldest means at our disposal to carve out meaning and even dignity in the face of illness and death. Although it must be left to each to find out how to do this: every therapist must foster this sense of spirituality, and honor the meaning found in it.

Getting around this page
Perspective        Assessment         Diagnosis        Treatment

Getting around this site
Home Page     Biology Page     Social Page
  Dictionary         Bibliography         Links  
A Social Link Production (1998)

Top of Psychology Page