Reclaiming Emotional Wellness
The Challenges of HIV and Mental Health
Deep in the shadows of the aids epidemic there are powerful forces that dramatically impact the quality of life for many living with HIV. Depression, anxiety, post-traumatic stress, and other mental health disorders can confuse, discourage, and stigmatize a significant portion of HIV-positive people.
Mental health impacts the full spectrum of HIV. It can determine who is at risk for acquiring the virus (people with a history of trauma or depressive disorders are more likely to become infected) and, after sero-conversion, it affects quality of life, medication adherence, levels of social support, and even the progression of the illness. Consider the following three cases:
Steve had been living with HIV for 20 years and experienced the demise not only of his good health but nearly everything that defined him. His career as an attorney abruptly unraveled which, in turn, eroded his financial independence. His marriage dissolved because his wife couldn't adjust to the demands of caretaking when he was extremely ill. He was forced onto disability, which left him bitter and judgmental about himself and others living with HIV. But the most significant loss of all was his sense of hope. He felt doomed to suffer medical complications and social indignities until he finally succumbed to the virus. His medication adherence became sporadic and on most days, despite being medically stable, he verbalized despair and no desire to keep living.
Angela was stunned when the counselor at the testing site told her she was HIV-positive. Although just 30 years old, she had survived several traumatic incidents in her life, including sexual abuse and witnessing violence in her home while growing up. She had always been able to tap into some internal strength to keep moving forward, but her positive HIV test result completely swept away her emotional foundation. For reasons unclear even to her, she felt herself becoming numb at the testing center and had stayed that way for nearly two months. She was having trouble sleeping, couldn't concentrate, was crying every day, and memories of all the prior trauma she thought had been resolved began flooding into her daily life. She felt overwhelmed and emotionally paralyzed.
Brian and his partner Paul had been in a relationship for six months. Early in their life as a couple they had gotten tested together for HIV and both were negative. They decided to remain monogamous and began having unprotected sex with each other. After six months, they went for an HIV test and were horrified to learn that Paul's test came back positive. Despite his own negative result, Brian began to notice strange aches and pains and was certain his lymph nodes were swollen. He felt compassion for Paul, but he secretly wondered if he could remain in the relationship. Brian found himself becoming obsessed with his own health, his partner's wellbeing, and their future. He began to experience shortness of breath, difficulty going out in public, and on many days, panic that left him housebound. The stronger these feelings became, the more he retreated from Paul and the world in general.
Understanding Mental Health
The ability to maintain emotional and behavioral health is the result of many complex factors ranging from biology to culture. Genetics determine the potential for certain emotional disorders onto which we add life experiences that shape our personalities and create unique profiles of emotional resilience. Elements of culture, such as spiritual beliefs and ideas about death, further impact our capacity for handling emotions, as do recreational or prescribed drugs that can numb feelings, affect thoughts and dreams, and propel our moods up or down.
A mental health diagnosis, for someone living with HIV, can add another layer to existing shame and stigma, which remains a potent force 30 years into the AIDS epidemic. Homosexuality or condemnation by one's spiritual community adds even more stigma, undermining the self-concept of vulnerable indiv iduals to the point of collapse.
Mental health disorders impact everything from quality of life to physical health, and healing involves building emotional resilience to the greatest extent possible. Although this requires commitment, support, and often medication and/or psychotherapy, most people who make the journey discover renewed compassion not only for themselves but for others as well.
Adjusting to a New Diagnosis of HIV/AIDS
Learning that you are HIV-positive is a life-changing moment. Anyone who has had this experience remembers the exact circumstances and their emotional and physical reactions trying to comprehend and assimilate this news. A lifetime of prior events guides our subconscious response at that moment of emotional shock. Reactions can include tears, inappropriate laughter, a flattening of affect (feelings or emotions expressed by physical gestures and body language), relief ("I knew this was coming"), or total numbing of feelings. At first, some people may be unable to comprehend the news ("that's impossible"), while others, such as Angela mentioned above, may experience a reawakening of prior trauma. Anyone in this position is vulnerable and requires emotional support. Rash decisions should be discouraged and assistance should be offered to enable any emerging feelings to be identified and expressed.
Assimilating this shock is a process of acceptance that varies with each individual. Feelings such as sadness, anger, or fear are completely normal, even if delayed. This is identified by the Diagnostic and Statistical Manual IV-TR (the standard set of guidelines published by the American Psychiatric Association) as an "Adjustment Disorder." There is no way to predict who might develop such a reaction, which is diagnosed through a variety of symptoms such as depressed mood, physical complaints, and agitation. Such adjustment reactions typically do not last longer than six months, although in the case of a chronic illness such as HIV/AIDS, the duration may vary. Supportive psychotherapy, including expression of feelings and assisting in the identification and creation of a support system, is usually sufficient to resolve an adjustment disorder and early intervention can prevent the development of more significant anxiety and depressive problems.
Common Mental Health Issues Associated With HIV
A variety of mental health problems can be experienced by people living with HIV/AIDS. The following section describes the more typical diagnostic categories and their associated interventions.
Neurologic Complications of HIV
While antiretroviral therapies have greatly reduced their prevalence, more than half of HIV-positive patients do experience some form of neurologic dysfunction ranging from mild to very severe.1 The most typical of these disorders is MCMD (minor cognitive motor disorder), characterized by mild impairment which may totally escape detection. MCMD does not necessarily progress to dementia. A more serious form is HAD (HIV-associated dementia), which includes cognitive dysfunction (problems with concentration, memory, and attention), declining motor performance (strength, dexterity, coordination), and behavioral changes. Both MCMD and HAD are diagnoses of exclusion, meaning other potential causes such as substance abuse or medication must be ruled out. Recent studies indicate that the risk of dementia related to cerebral atrophy may be associated with the CD4 nadir (the lowest point) rather than current CD4 levels.2 While there are no specific treatments, antiretroviral therapy along with other interventions, such as structured routines, memory aids, and good nutrition, may greatly reduce symptoms.3 Other HIV-related neurologic disorders include encephalitis, meningitis, neuropathy, and the very rare but lethal PML (progressive multifocal leukoencephalopathy).
Mood disorders, or conditions that affect an individual's mood, include those that result in depressive symptoms (major depressive disorder and dysthymia) and those with intermittent mania which can be frequently accompanied by a depressive phase (bipolar disorder). Depressive disorders are one of the most common mental health concerns among HIV patients. While they can appear or become more severe following an HIV diagnosis, symptoms can increase at any time due to medical complications, loss of a loved one, or other psychosocial stressors. Certain subgroups of individuals living with HIV are at greater risk for mood disorders. Major depressive disorder, for example, occurs more frequently in substance abusers,4 older patients,5 and females with a history of abuse (as in the case of Angela noted above).6
Major depressive disorder (MDD) creates a pervasive low mood which inhibits the ability to experience pleasure. It has a prevalence as high as 36% among individuals living with HIV.7 People experiencing depression may be preoccupied with thoughts or feelings of worthlessness, regret, hopelessness, and despair. A second, milder type of depression called dysthymia, in which symptoms are chronic but less severe than with major depressive disorder, is also prevalent.
Depressive disorders are frequently difficult to diagnose because their broad cluster of symptoms (increased or decreased sleep and/or appetite, low mood, low energy, etc.) can also occur as a result of HIV itself, various opportunistic infections, or co-morbidities such as hepatitis C. If undiagnosed, major depressive disorder can lead either to an increased risk of HIV transmission, or among those already positive, a lack of adherence to HIV medication regimens or relapse of substance abuse.
Suicide is a serious risk for someone experiencing ongoing MDD and any suic idal thoughts and/or plan must be immediately addressed. In one recent study, 26% of people with HIV reported suicidal thoughts at some time in their life, and 13% reported a suicide attempt. Those who attempted suicide were more likely to also have a problem with substance abuse.8 These statistics underscore the need to address concurrent mental health and addiction problems in people living with HIV.
There are no laboratory tests for depression, but there are several widely-used screening tools that are used to identify those at risk for the disorder. Once diagnosed, a number of medications are effective at treating depression. The most common are called SSRIs (selective serotonin re-uptake inhibitors) that are generally well-tolerated by HIV-positive people, but which can take two to four weeks before patients begin to feel relief from their depressive symptoms. While they are helpful for depression, they can cause a reduction of sexual desire and delayed ejaculation. Besides SSRIs, there are several other classes of antidepressant medication that are also effective.
Some HIV drugs, such as Norvir (ritonavir), can interact with certain SSRIs and create blood levels which are too high. When monitored, however, both SSRIs and an older class of antidepressants called tricyclics are safe when combined with HIV medications. Herbal remedies for depression represent another significant drug interaction risk with HIV medications. For example, St. John's Wort should not be used as it can cause a drop in blood levels of the antiviral. Patients should always discuss all their medications, including herbs, with their physician.
Psychotherapy is an effective treatment for depression. In fact, research suggests that the most powerful intervention is a combination of pharmacological and psychotherapeutic approaches.9 A psychotherapist works with patients to teach them specific skills to modify thoughts and behaviors, as well as other types of interpersonal therapy which can focus on issues of loss and grief, acceptance, and identity. Group modalities, as well, are a powerful way to break the isolation typical of HIV and provide a forum in which patients can both give and receive support.
This article was provided by Test Positive Aware Network. It is a part of the publication Positively Aware. Visit TPAN's website to find out more about their activities, publications and services.
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