"It is the scariest feeling of my life. I'm sitting at home, alone in my bathroom. My heart is racing, my palms are so sweaty that I can't even grab the sink to stand up. So I just sit here on the floor. I keep trying to catch my breath. What is happening to me? My stomach is in knots. Every day I catch myself staring at my face in the mirror, obsessively inspecting my throat, feeling my glands, examining my skin, looking for signs that I know will confirm my worst fear: I really do have AIDS."
This narrative describes what is commonly referred to as a panic attack, the sudden onset of overwhelming and debilitating feelings of anxiety. Over the last 25 years, since the first public announcements about HIV in the early 1980s, thousands of adults have experienced this type of panic attack, which is often called "AIDS panic."
Anxiety is a common response to extreme stressors, but it can also be a symptom of a more significant underlying anxiety disorder. Anecdotal reports from mental health providers indicate that HIV positive people (and others living with serious medical conditions) are more prone to anxiety symptoms due to the stress of managing a chronic illness. In fact, up to 70% of people with HIV report persistent anxiety symptoms, and up to 40% meet the criteria for an anxiety disorder.
Anxiety can be a prominent symptom following initial HIV diagnosis, and anxiety symptoms can frequently recur and escalate in response to disease progression. It is perfectly reasonable for HIV positive individuals to feel anxious about such health indicators as declining CD4 cell counts or the appearance of opportunistic infections; however, anxious feelings that escalate from normal worry to full-blown panic may signal an anxiety disorder. This article describes anxiety and anxiety disorders, and how people living with HIV can conquer them.
Acute anxiety is the most common mental illness in the United States, with conservative estimates of between 19 million and 25 million reported cases per year. However, anxiety is not a discrete condition. "Anxiety" is a blanket term that covers a wide range of emotional responses and disorders. The American Psychological Association's Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV-TR), recognizes 12 specific conditions under the broad heading of "anxiety disorders," including phobias, panic attacks, and obsessive-compulsive disorders.
Anxiety itself is not a mental disorder. Rather, it is a normal emotional response to stress and the perception of danger. The baseline for anxiety is simple fear. Fear is instructive and protective: it tells us when we are in danger and prepares us to take action to defend ourselves or retreat to safety. What is generally called anxiety can be likened to an extreme presentation of the normal fear response.
Fear and anxiety cannot be entirely circumvented; the welfare and survival of the individual depend on them. For example, it would be quite normal to feel anxious when being stalked by a tiger, and it would be normal to experience anxiety for a short while after the tiger has passed (just in case it returns). It would also be normal to worry about when the tiger might stroll by again. Without fear, an individual would not be able to accurately identify danger and would therefore be overly susceptible to harm.
This entire response pattern is autonomic (controlled by the autonomic nervous system). In this sense, we can say that humans are hard wired for anxiety, and because of this wiring we can never entirely eliminate it. Therefore, we must approach anxiety problems systemically -- from the inside out, by taking medications or developing behavioral strategies that interrupt these biological responses, or from the outside in, by reducing the stressors and avoiding the situations that provoke anxiety.
The difference between normal worry and an anxiety disorder is a matter of degree. Anxiety is only considered part of a disorder when it is extreme and pervasive, and when it interferes with a person's ability to function normally. In this sense, anxiety is more accurately conceptualized as a spectrum of responses, with mild apprehension and "gut feelings" at one end, a normal and accurate fear response in the middle, and more serious and debilitating emotional responses, such as panic attacks, at the opposite end. (See sidebar below for more about panic attacks.)
An anxiety disorder is a particular configuration of clinical anxiety, distinguished mainly by the etiology (source), presentation (how the anxiety is expressed), and triggering mechanism. Generally speaking, anxiety disorders are characterized by either an exaggerated response to real and immediate danger or a misinterpretation of an inherently non-threatening situation.
The key element in most forms of clinical anxiety is that a person's subjective perception becomes distorted, rendering him or her unable to discern between a minor problem and a true crisis. (See sidebar below for a list of common distorted perceptions.) Ordinary situations trigger the "fight, flight, or freeze" response, or anxious feelings may persist for days with no apparent trigger, and stress continues to build. Finally, the individual becomes overwhelmed and unable to function.
Identifying the etiology of an anxiety disorder is often difficult because the linkages may not be readily apparent. An individual's anxiety may be related to a past traumatic event or to fears that have been suppressed. Anxiety disorders can also result from ongoing stressful situations, such as living in a dangerous neighborhood, being in a rocky relationship, or working in a high-stress job.
Therefore, the two primary therapeutic tasks essential to conquering anxiety are repairing distorted perceptions and resetting hypersensitive body systems. Understanding and treating anxiety disorders involves breaking the "code" in a person's brain that automatically links up certain thoughts and experiences with fear, and helping to develop new response patterns, or "coping skills."
Based on the subjective experience of the individual, clinical anxiety can be classified into categories (specific or non-specific anxiety) and subcategories (such as anticipatory anxiety). These distinctions can be helpful for treatment because they break down the anxiety response into its component parts, thereby providing a framework for understanding and changing it.
In the majority of cases of clinical anxiety, the fearful feelings are fixated on a specific threat: an identifiable person, activity, event, or circumstance. This type of anxiety is therefore known as "specific anxiety."
Specific anxiety can be situational, as with social phobias, or historical, as with past traumatic events. Specific anxiety can be slightly easier to manage because the threat and the triggers for anxious feelings are known and can be addressed through psychotherapy.
On the other hand, non-specific anxiety -- fears that are not easily attributed to any particular source or trigger -- are often more disturbing for the individual and more difficult to manage clinically. This type of anxiety is called "free-floating anxiety" when the anxious feelings occur spontaneously and without any apparent cause.
Most often, non-specific anxiety has a biological basis. It may be physiological, structural, and/or genetic. Indeed, some people are genetically predisposed to be more sensitive and anxious. Non-specific anxiety can also be a symptom of another mental illness or a neurological disorder, or a side effect of medications or substance abuse.
The primary course of treatment for non-specific anxiety is pharmacological, with the goal of managing the physical symptoms while the exact etiology is being determined. Often, as symptoms diminish, underlying psychological factors emerge which can then be treated through counseling. Psychotropic medications may provide the individual with the emotional stability needed to shift his or her focus from the physical discomfort of an anxiety response toward the thought processes that perpetuate it.
Testing HIV positive is a life-changing event, and anxiety around a positive diagnosis is perfectly normal. However, the recurring stressors involved in managing the disease can complicate the resolution of anxiety in the lives of HIV positive individuals and may cause them to worry continually about future threats to their health and well-being. Mental health professionals use the term "anticipatory anxiety" to describe this constant, fearful rumination over an expected future event or condition.
The stressors that contribute to anticipatory anxiety can be classified as internal/endogenous, referring to stress and anxiety that originate from stimuli in the individual's own mind, and external/exogenous, stressors arising from the constant influence, pressure, and demands of the external world. In most situations, anticipatory anxiety results from the interplay of internal conditions and external events. For example, deciding to change a drug regimen and worrying about potential new side effects represent internal/endogenous conditions, whereas actually experiencing side effects from a new regimen represents an external/exogenous event.
Each type of stressor presents a unique challenge to be addressed and resolved. Endogenous stress and anxiety can be resolved by increasing coping skills through "talk therapy" or mind-body techniques, in combination with psychotropic medications if needed. Exogenous stressors can be managed by desensitization therapies, avoiding potential stressful situations, increasing emotional support, and treating physical symptoms. (Treatment options are discussed in greater detail below.)
Three primary categories of endogenous conditions contribute to anxiety states:
Each person's internal landscape is a distinct combination of these attributes; based on their unique internal composition, some individuals are highly resistant to stress and anxiety, while others are much more susceptible. Dozens of studies suggest that a person can be genetically, biologically, or environmentally predisposed to anxiety.
In addition, habitual patterns of consternation and worrying seem to be more prevalent in individuals facing physical challenges and chronic illness. The illness or disease presents challenges that may overwhelm even the most stable emotional structure. People with HIV/AIDS may be faced with a cacophony of thoughts, feelings, and decisions which they must endeavor to sort out and manage, including feeling discouraged by lab results; deciding to begin or change a drug regimen; worrying about disease progression; and becoming hyperaware of changes in body shape, appearance, and sex drive. In these instances, the anxiety begins internally and creates an endless cycle of fearful rumination.
The challenge of dealing with internal stressors is to end the pattern of constant rumination and curb the body's accompanying responses, which typically include sweating, rapid heart rate, and flushing. People who experience chronic anxiety are often acutely aware of these physical symptoms but are confused about how to alleviate them, sometimes making choices that actually prolong the anxiety response. The anxious person may begin to "catastrophize," filling the mind with images of painful or embarrassing situations in the past which he or she fears will be repeated. The individual may also try to cover or hide visible symptoms of anxiety by overcompensating with bravado, anger, or solicitousness -- thereby exacerbating feelings of being out of control and perpetuating the physical symptoms of anxiety or panic.
Waiting to learn the results of an HIV test is an excellent example of an external event that can produce anticipatory anxiety. This event represents a "fork in the road": one path leads to a sense of relief that may be followed by continued anxiety ("I dodged the bullet this time"), whereas the other path leads to a sequence of progressively more stressful triggers and external events, such as medical exams, lab tests, and disclosures.
External events often force an individual to cope with anxiety in the presence of others. Speaking with doctors and counselors and disclosing HIV status are situations in which a person must confront anxiety in "real time" and in the presence of other people. What is particularly challenging about dealing with these external events is that the individual must find a way to tolerate the anxiety without dissociating, or withdrawing emotionally from the anxiety-producing situation.
Experiencing anxiety in the presence of other people can trigger other emotions -- such as embarrassment, shame, and feelings of worthlessness -- that further exacerbate the anxiety state. This process is referred to as reciprocal influence: the external situation elicits an internal emotional reaction which in turn influences the individual's behaviors, and other people may then react in ways that provoke further anxiety for the individual.
People with social phobias are particularly susceptible to reciprocal influence. For example, the conspicuously self-conscious behavior of a person who dreads being stared at may incite the very attention he or she fears.
Acutely aware of bodily changes resulting from the disease and the medications used to treat it, HIV positive individuals are often hypersensitive to the types of physical exposure common in medical examinations and intimate encounters. These situations can provoke feelings of anxiety or panic as the individual braces for an expected unfavorable reaction. Yet avoiding these anxiety-producing situations altogether often results in further painful feelings, such as isolation, alienation, and shame. An anxious person who anticipates a negative experience may therefore unconsciously contribute to that very outcome.
Anxiety is closely associated with trauma. Traumatic events that are experienced directly include assault, incarceration, natural disasters, car accidents, physical or sexual abuse, and being diagnosed with a life-threatening illness. Trauma can also be experienced second-hand when an individual witnesses someone else's traumatic experience, such as domestic violence or a traffic accident.
Individuals who have suffered direct or indirect trauma in the past may be more susceptible to frequent and extreme anxiety later in life. Furthermore, a new trauma -- even one of a lesser degree -- can trigger the same feelings that accompanied the past traumatic event, which may distort the individual's experience of the new situation and magnify the reaction. The person must then deal with the new trauma while also re-experiencing intrusive recollections of the original event.
Anxiety related to past trauma is often referred to as post-traumatic stress disorder (PTSD). Receiving an HIV diagnosis has been shown to increase the risk of PTSD; therefore, a thorough trauma history should always be included in an assessment with a medical provider or psychotherapist. Because it can feel painful and even shameful to divulge traumatic experiences, it is important to have a secure relationship with a sensitive and non-judgmental health-care professional or counselor.
In the field of mental health, shame is the subject of countless books, articles, and seminars. The word "shame" is used so frequently that it can begin to lose its meaning. But the connection between shame and anxiety is undeniable: intense feelings of shame can quickly escalate into anxiety and panic.
Predisposition to shame and anxiety is mediated by many factors: trauma history, sense of self and self esteem, resilience (the ability to bounce back from stressful events), and availability and quality of support networks.
Preoccupation with an HIV diagnosis can be constant and overwhelming and is frequently characterized by feelings of shame. Our clients often report engaging in an endless loop of negative thoughts, alternating between messages of fear and self-recrimination. It can take days, weeks, months, or even years to break this anxious cycle of negativity, or "shame spiral."
Overcoming shame requires the ability to forgive oneself and the strength to withstand the judgments of others. It also necessitates an understanding of one's own reactions to feelings of shame. The "shame continuum," outlined below, can help identify the start of a shame spiral and halt its progression.
Treatment options for anxiety disorders include both medical and non medical interventions. Counseling and psychotherapy, psychotropic medications, non-traditional (holistic) modalities, changing behaviors to reduce stress, and developing new coping strategies are all ways to treat and manage anxiety.
As a general rule, because of the complex nature of anxiety disorders, the most effective treatment is an individualized regimen that addresses both mind and body; many patients also benefit from incorporating spiritual practices into this regimen.
In most cases, anxiety symptoms can be significantly reduced through a daily program of focused relaxation (such as rhythmic breathing, meditation, or listening to music), physical exertion (yoga, dancing, or cycling, for example), and conscious expression (such as journaling, psychotherapy, or group therapy), combined with psychotropic medications as appropriate. In many cases, pharmaceutical treatments for anxiety disorders are considered a short-term intervention. This temporary use of psychotropic medications can help stabilize the individual through a crisis period and provide a sufficient "break" to correct distorted perspectives and develop healthier responses to stressors.
Establishing a relationship with a psychotherapist familiar with HIV disease can, in itself, decrease the experience of anxiety by providing regular, ongoing support. Therapists use a variety of techniques to help a person express and resolve the mental and emotional underpinnings of anxiety. Cognitive behavioral therapy is the most commonly used approach. Behavior change starts with the identification of maladaptive behavior patterns and activities that increase anxiety, and cognitive behavioral therapy helps individuals change these patterns by identifying the irrational beliefs and fears that distort their thinking and provoke anxiety.
One behavior-change technique, developed by James Prochaska, Ph.D., and Carlo DiClemente, Ph.D., is based on six stages of change: pre-contemplation, contemplation, preparation, action, maintenance, and relapse. In the pre-contemplation stage, the goal is to encourage self-exploration. In contemplation, the individual evaluates the pros and cons of behavior change. Preparation involves "testing the waters" and identifying obstacles, building social support, and initiating small changes. In the action stage, new behaviors are practiced; for example, taking action against anxiety may include "talking back" to negative thoughts. The maintenance stage reinforces the commitment to sustaining new behavior patterns by establishing internal rewards and preparing for possible relapse. Relapse is the resumption of old behaviors, and the task of this stage is to forgive oneself, evaluate what has been learned in the process, reassess motivation, and plan for stronger coping strategies.
Cognitive behavioral therapy has been integrated and adapted into a variety of new modalities, such as solution-focused therapy and neuro-linguistic programming, to address the habitual mental processes that directly affect emotions. Solution-focused therapy is a short-term approach directed toward the resolution of a specific problem. Used in collaboration with a therapist, solution-focused techniques identify and augment existing resources and strengths. Individuals learn how to break down a problem or situation into small, manageable "action steps" that enable them to change their behaviors without becoming overwhelmed by anxiety or panic responses. Neuro-linguistic programming focuses on language as a tool for behavior change. Once a person understands and changes how language influences thought patterns and behaviors, it may be easier to process information, control emotional responses (such as anxiety or panic), and manage anxiety.
Contemporary psychodynamic psychotherapy, another fairly new approach, uses the relationship created between client and therapist as a foundation for analyzing the client's maladaptive behaviors and their triggers. The examination of the co-created relationship within the microcosm of psychotherapy gives clues to how the individual creates relationships in the macrocosm of his or her life. (Because this approach requires a lengthy period of relationship-building between client and therapist, it is not employed as a first-line treatment for acute anxiety.)
Group therapy is another excellent way to approach anxiety through psychotherapy. Participation in group therapy allows members to express individual problems and emotional issues in a safe forum, usually facilitated by a mental health professional. Group therapy increases social support through sharing feelings and problems, and has the added benefit of normalizing the patient's internal experience by showing that others have similar experiences and reactions to stressors; by normalizing the individual's experience, the group dynamic decreases anxiety. Group therapy also creates a space in which to practice communication with others -- another key technique for anxiety reduction. The positive impact of group therapy has been extensively researched and shown to increase the life spans of people with serious illnesses.
Several types of medications can be used to treat anxiety:
Medications Commonly Prescribed for Anxiety
When treating HIV positive people for anxiety, it is important to be aware of potential interactions with antiretroviral medications and other medical treatments. Drug interactions may increase the levels of the psychotropic drugs, causing distressing side effects. As with any medical regimen, adherence to anti-anxiety drugs is greatly impacted by the presence and severity of side effects. Most clients and psychiatrists acknowledge that side effects, including weight gain and diminished sex drive, are the primary reason for interrupting or discontinuing medication for treating anxiety.
Since the 1960s, mind-body interactions have become an extensively researched field. The evidence for benefits from biofeedback techniques and hypnosis is quite good, and there is emerging evidence in support of their positive physiological effects. A wide range of treatment choices that do not include traditional psychotherapy or medication have been shown to be helpful in managing anxiety. Some of these include focused relaxation and stress reduction, hypnosis, meditation, and yoga and other forms of exercise.
Systematic focused relaxation techniques involve directing attention to the body, one muscle group at a time, and releasing stress and tension in a methodical, organized fashion. Hypnosis works in a similar way to teach mindful relaxation through hypnotic inductions. Many psychotherapists are trained in the use of hypnosis, and audio cassettes and CDs are available for exploring these guided techniques.
Meditation represents one of the most commonly practiced mind-body interventions. It is a conscious mental process that induces a relaxation response; people typically meditate by closing their eyes, clearing their minds, and focusing on their breathing while in a seated or reclining position, either alone or with others in a quiet room or outdoor space. (However, while meditation usually facilitates anxiety reduction, anecdotal data suggest that it may be contraindicated for individuals with anxiety disorders: some anxious patients find that meditation leads to a more acute focus on the anxiety itself.)
Both a form of physical exercise and a way to calm the mind, yoga involves a series of postures and stretches and focuses on the breathing. Deep-breathing techniques can alleviate the onset of a panic attack by slowing the racing heart. Many yoga teachers and practitioners also enjoy a spiritual component to this ancient exercise form. Other physical exercise, such as working out at the gym, practicing tai chi or qi gong, swimming, cycling, walking, or running, can help to break the cycle of anxiety by eliminating pent-up energy and shifting the mind's focus from the internal tyranny of negative thoughts to external stimuli and the sensations of physical exertion.
Anxiety about HIV health is absolutely normal; the trick is recognizing when normal anxiety has escalated into an anxiety disorder. The mental, emotional, and physical stress caused by managing a chronic disease can render HIV positive people highly susceptible to anxiety disorders. And unfortunately, anxiety has been shown to contribute to poor adherence to antiretroviral regimens, putting people with HIV at greater risk for disease progression -- and setting them up for further anxiety.
Fortunately, most people can successfully manage their anxiety through a combination of focused relaxation, physical exertion, and conscious expression, with or without the use of psychotropic medications. And choosing to treat anxiety pharmacologically does not necessarily mean an increased pill burden for life; short-term use of psychotropic medications is an effective anti-anxiety intervention for many people. The diversity of effective approaches to reducing anxiety means that HIV positive people have many options for treating anxiety disorders and managing the anxious feelings and anxiety symptoms that surface around issues of HIV health.
Joni Lavick, M.F.T., is a psychotherapist in private practice in Santa Monica, California, and a staff therapist and past Director of Mental Health Services at the L. A. Gay & Lesbian Center. She has worked with HIV positive people since 1988.
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Brown, C. and T. Augusta-Scott. Narrative Therapy: Making Meaning, Making Lives. Thousand Oaks, CA: Sage Publications. 2006.
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Prochaska, J. and C. DiClemente. Transtheoretical therapy:toward a more integrative model of change. Psychotherapy: Theory, Research and Practice 19(3):276--288. 1982.
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This article was provided by San Francisco AIDS Foundation. It is a part of the publication Bulletin of Experimental Treatments for AIDS. Visit San Francisco AIDS Foundation's Web site to find out more about their activities, publications and services.