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.
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.
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.
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.
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.
Anxiety disorders are common among those living with HIV. One recent study found that as many as 45% of HIV-positive individuals also had an anxiety disorder.10 Surprisingly, these rates were highest among those on antiretroviral medications with an undetectable viral load. Anxiety disorders significantly impact an individual's quality of life and have an adverse effect on adherence to medications and other treatment interventions. There is also evidence that chronic anxiety affects hormonal balance in such a way that immune function is impeded.11
Symptoms of anxiety range from those that are barely noticeable to paralyzing panic attacks, making them difficult at times to diagnose. Many symptoms are physiological, such as a racing pulse, chest pain, sweating, and hyperventilation. Brian, mentioned above, experienced disabling symptoms of panic based on his fear of having become infected by his partner Paul. Anxiety disorders frequently occur with other mood disorders. For example, as many as half of individuals who experience panic disorder also experience MDD.12 Women experience anxiety disorders, particularly panic disorder, more frequently than men.13
Post-traumatic stress disorder (PTSD) can result from witnessing or experiencing an event beyond what would be considered normal and which involves the threat of death or actual injury. As noted earlier, a history of abuse can increase the risk of PTSD among persons living with HIV. Symptoms, such as those described for Angela, include frightening physiological reactions, nightmares, and other symptoms of emotional shock. PTSD can result in social withdrawal and a sense of a foreshortened future.
Treatment for anxiety disorders often includes pharmacological interventions. Specific SSRIs (noted above for treatment of depression) are effective for certain anxiety disorders, including obsessive-compulsive disorder (OCD). Other medications are approved to treat anxiety, including buspirone and some beta blockers. Benzodiazepines can be effective at resolving acute symptoms of anxiety but, because of their addictive potential, should only be used in the short-term and with great caution in anyone with a history of substance abuse. Benzodiazepine withdrawal is dangerous and should always occur under the direction of a physician.
Psychotherapy is also an effective means of treating anxiety disorders. Cognitive behavioral therapy can greatly reduce symptoms of anxiety by focusing on thought patterns and the "here and now." Therapy can also teach various stress management techniques that significantly improve one's ability to engage in social and medical activities. Specialized treatment techniques such as hypnotherapy and EMDR (eye movement desensitization and reprocessing), among others, are effective for treating PTSD.
In addition to medication and therapy, anyone experiencing symptoms of anxiety should refrain from ingesting caffeine. Symptoms can also be controlled through increased exercise and relaxation procedures such as deep breathing and meditation.
The use of recreational drugs along with the abuse of prescription medication, particularly benzodiazepines and opiates, is intimately bound to HIV and mental health. Addiction increases both the risk of acquiring HIV and greatly complicates the medical and psychological management of living with the virus. The desire to numb feelings or escape into fantasy, despite potential life-threatening complications, is seductive for many with HIV. The grief of cumulative losses, shame, fear, and other overwhelming feelings can easily propel someone to the short-term relief of a mood-altering substance.
While a comprehensive discussion of substance abuse is beyond the scope of this article, it is important to note how HIV, mental health, and substance abuse converge into syndemics, or simultaneous epidemics, each impacting the other. One striking example is the methamphetamine epidemic among gay men. Meth is an amphetamine that works on the pleasure center of the brain, releasing a torrent of dopamine that quickly washes away any feelings of inhibition and even depression. It also triggers intense sexual thoughts that can result in high-risk sexual marathons.
While meth is a risk factor for becoming HIV-positive, it creates havoc among those who have already sero-converted. I work with many gay men in their 40s and 50s who have lived with the virus for years. Many have begun to feel less energetic, less attractive, less sexual, and socially isolated. Meth washes away these concerns, creating an artificial sense of confidence and empowerment. A significant number of meth users soon become drawn into a vortex of increased drug use and severe social, medical, and sometimes legal consequences. Many stop taking their antiretroviral medications, which can create drug resistance. The depletion of dopamine can result in severe depression and feelings of hopelessness which can persist well into recovery because the brain requires months to "rewire" neural pathways damaged by the drug.
There are many resources available to anyone seeking assistance for substance abuse. Medications can reduce cravings for certain types of drugs. Support groups, whether twelve-step or alternative, such as SMART Recovery, have saved thousands of lives. Counseling can assist with underlying issues as well as the development of relapse prevention plans. Recognizing substance abuse and taking steps to reduce its harm can have a tremendous impact on HIV-related mental health concerns.
HIV presents formidable barriers to achieving and maintaining emotional well-being. Despite these challenges, there are steps that anyone living with HIV can take to promote their own mental health and quality of life. Here are a few that can build emotional resilience:
Carefully monitor your emotional state and share any concerns with your physician or other providers. Certain disorders require pharmacological intervention. If your depressed, manic, or anxious moods seem beyond your control, you might benefit from medication that could give you a stable foundation on which to implement the other suggestions in this section.
Living with HIV produces a number of negative emotions which must be identified and released. Whether at the initial diagnosis, when making the decision to begin meds, or during a medical setback, an emotional process ensues which can include a swirl of anger, denial, and sadness. Because holding on to these feelings aggravates both physical and mental conditions, it is important to find ways to release them through verbal expression, physical exercise, creative endeavors, or any other means possible.
HIV, in many cases, creates increased isolation and loneliness. Physical mobility, feeling ill, shame, and depression can all contribute to a withdrawal from society. It is critical to fight the urge to isolate and to re-establish connections with others. Social contact promotes healing at a number of levels and benefits not only the individual but everyone they come in contact with.
Each of us needs emotional nourishment to heal. Many people derive strength from their spiritual life. Others find that nature, or work in the garden, or playing with their pet can ground them and re-establish emotional balance. Maintaining an awareness of our inner thoughts and feelings assists us in overcoming stigma, shame, and other negative emotions, and in expanding our connection with others and our role in a larger healing community.
Daily healthy routines are not only beneficial in and of themselves, but they subtly affirm our inner sense of value and worth. A healthy diet, adequate sleep, minimal use of mood altering substances, and physical exercise all contribute enormously to mental health. Remaining focused on the present and not letting our thoughts drift too frequently into the past or the future can greatly reduce stress. If negative emotions take hold, a simple act, such as creating a list of things for which we are grateful, can often bring us back into balance. Any actions that reinforce personal empowerment are beneficial for our health and our emotions.
Living with HIV creates challenges to mental health that cannot be underestimated, yet the power to create positive feelings, healthy relationships, and an inner sense of peace lies within each of us. When we maintain our emotional balance, HIV can remain just one piece of the rich emotional mosaic of our lives.
David Fawcett is a psychotherapist and clinical hypnotherapist in private practice in Fort Lauderdale, Florida. He is active in the gay men's health movement, writes regularly for TheBody.com, and is a national trainer for the National Association of Social Workers' "HIV Spectrum Project."