Post-traumatic stress disorder (PTSD) is often thought about in the setting of war and the military, but there are numerous other high-risk groups and types of traumatic experiences that may precipitate PTSD. In fact, studies suggest 20-40% of HIV-positive people meet criteria for PTSD, which is two to four times higher than in the general population.1-3
Larry is a 43-year-old, successful accountant who has been living with HIV for the past 10 years. He has had a stably suppressed viral load since starting antiretroviral treatment seven years ago. He comes to the clinic for a routine care visit. Before his exam, I review his chart and am surprised to see his viral load is now 1,750 copies/mL. Larry is unshaven and seems distant when I greet him. He appears unsettled and fidgety, which is highly uncharacteristic.
What Is PTSD?
PTSD is a severe anxiety disorder that can occur in people who have experienced major psychological distress, or trauma, as a result of a serious adverse life event. These events typically involve concern for serious injury or death, or a threat to physical safety. They invoke a response of horror, intense fear, and a sense of helplessness.
Common Symptoms of Post-Traumatic Stress Disorder (PTSD)
Re-experiencing the traumatic event:
- Frequent and distressing memories of the event
- Frequent distressing dreams
- Feeling like the event is happening again (flashbacks)
- Psychological distress from cues that are reminders of the event
- Physical symptoms from cues that are reminders of the event: sweating, rapid heartbeat, nausea, rapid breathing
Avoidance and numbing:
- Efforts to avoid thoughts and feelings related to the event
- Efforts to avoid people, places, and activities related to the event
- Inability to remember important aspects of the event
- Decreased interest in significant activities
- Sense of detachment from others
- Emotional numbness -- limited range of feelings
- Sense of limited future
Increased arousal and emotional volatility:
- Insomnia -- difficulty falling asleep or staying asleep
- Feeling irritable
- Angry outbursts
- Difficulty concentrating
- Never feeling at ease; always "on guard" (hypervigilance)
- Easily startled or feeling jumpy
Traumatic Life Events Commonly Experienced Among People Living With HIV
- Sexual abuse
- Physical abuse
- Childhood physical neglect
- Childhood emotional neglect
- Being placed in reform school, prison, or jail
- Parental alcohol or drug abuse
- Parental suicide or attempt
- Parental imprisonment
- Violence in the home
- Having a life-threatening illness unrelated to HIV
- Murder of a family member
- Death of a child
- Death of a spouse or partner
- Diagnosis of HIV infection
A wide range of symptoms may be experienced among those with PTSD, classified into three groups (see sidebar):
- Re-experiencing the traumatic event (flashbacks)
- Avoidance and numbing
- Increased arousal and emotional volatility
These psychological, emotional, and physical symptoms are normal responses after experiencing a traumatic event. When symptoms last for longer than one month and interfere with social and/or occupational functioning, however, a diagnosis of PTSD is considered. Not everyone who experiences traumatic events will go on to develop PTSD, which occurs in roughly one out of five people following trauma.
Symptoms are further classified as "acute" if present for less than three months, and "chronic" if they last longer than three months. PTSD is described as "with delayed onset" if symptoms begin six months or longer after the traumatic event occurs. This is less common, as most people diagnosed with PTSD experience symptom onset shortly after the traumatic event.
Trauma, PTSD and HIV
The lifetime occurrence of traumatic events is incredibly common among HIV-positive people -- greater than 90% of individuals have experienced at least one in a range of events (see sidebar). The diagnosis of HIV itself may serve as a traumatic event. Other traumatic events include physical and sexual abuse, experienced by roughly 50% of people living with HIV, or other childhood and adult events involving the individual and/or family and loved ones, especially parents, children, and spouses or partners.
In one larger study, the average number of different traumatic events experienced by people living with HIV was three, with some having experienced as many as 12 distinct types of events.4 Individuals who have experienced traumatic events are at increased risk of future traumatic events -- commonly referred to as "re-victimization."
Despite the high frequency of childhood physical and sexual abuse and other traumatic life events in their HIV-positive patients, most clinicians do not routinely screen for PTSD.
When I initially probe as to what's going on, Larry gives a dismissive response and assures me everything is okay. Upon further questioning, he breaks down and explains that a new boss at work reminds him of an uncle who abused him as a child. He's been feeling angry, agitated, and has had difficulty concentrating at work. He's not sleeping well and is plagued by intrusive thoughts about the abuse he experienced as a child. He feels distant from his partner and out of touch with his emotions. Larry needs help.
Effects of Trauma and Stress on HIV-Positive People
Traumatic life events have important implications for health behaviors and outcomes in people living with HIV. A number of studies have shown the damaging impact of PTSD on medication adherence, sexual risk behaviors, and HIV disease progression.1-4
A robust collection of literature has linked traumatic life events, even in the absence of PTSD, with a range of unhealthy behaviors and outcomes. It shows that people who experience a higher number of distinct traumatic life events are more likely to engage in unprotected sex, be non-adherent to their antiretroviral medications, go to an emergency room or become hospitalized, and report lower overall health and well being, with greater risk for HIV disease progression.
Stressful life events are also incredibly common among HIV-positive people, especially those who have experienced past traumatic events. Day-to-day stress -- like that related to finances, relationships, employment, safety, life transitions, and legal issues -- has a major impact on health and behaviors.5 That includes things such as foreclosure, not having money to pay bills, separation from a spouse or partner, being burglarized, or being arrested and put in jail or prison.
As seen with lifetime trauma and PTSD, people living with HIV that experience stressful life events are more likely to engage in unprotected sex, not take antiretroviral medications as prescribed, and experience viral load failure. This is magnified in the setting of past traumatic events, leading many to advocate for routine trauma and PTSD screening as a normal component of HIV clinical care -- particularly because several brief tools are available to conduct such assessments.3
Mental Illness, Substance Abuse, Trauma and PTSD
It is widely recognized that mental illness, especially depression and substance abuse, are common conditions in people living with HIV. Similarly, the relationships between depression, substance abuse, and adverse health-related behaviors and outcomes are equally well known.
Perhaps less commonly discussed is the overlap between trauma, PTSD, mental illness, and substance abuse, which is extremely common and of concern on numerous levels. Namely, each of these conditions is linked to unhealthy behaviors and unfavorable outcomes on their own. When combined, the impact is even further exacerbated. Moreover, as observed in those with PTSD, difficulty in establishing trust and utilizing social support may interfere with care-seeking and management of mental illness and substance abuse.1
To date, studies have shown that these relationships are incredibly complex and that it is not easy to untangle the roles of trauma, PTSD, mental illness, and substance abuse in terms of how they interact and lead to negative health effects.1-4 Research has tried to better understand the relationships between these common co-occurring conditions. Do childhood traumatic events predispose someone to depression and substance abuse? Do past traumatic events and PTSD negatively impact health behaviors and outcomes by way of increased risk for new stressful life events and re-victimization? Or is reoccurrence of trauma and PTSD perhaps due to a higher frequency of mental illness and substance abuse? While there may not be definitive answers, it is clear that these conditions commonly co-occur and when they do, their adverse impact on health and well being are increased.
Diagnosis and Treatment for Trauma and PTSD
The first essential step for initiating trauma and PTSD treatment is identification. While this seems obvious, screening is not commonplace in most HIV clinical settings.
People living with HIV may not recognize that the symptoms they are experiencing relate to traumatic life events, or have knowledge of PTSD, or feel comfortable talking about trauma and related symptoms with their health care provider or loved ones. Although difficult, acknowledging past traumatic events, recognizing symptoms indicative of PTSD, and breaking the silence are vital steps towards seeking medical help.
Trauma and PTSD treatment has focused on intensive psychological and behavioral approaches, with a common theme of group-based support sessions and emphasis on coping skills.3 The focus is generally on developing and enhancing adaptive, or healthy, coping mechanisms like problem-solving, positive re-framing, and relaxation techniques, as well as stress management and sexual risk reduction skills. Common subjects addressed are things like intimacy, safety, and self-esteem, in the context of past trauma, re-victimization, and HIV.6
Few interventions have been rigorously tested through randomized trials. There is a compelling need for more intervention research.
Larry connected with a clinical psychologist, which was highly beneficial for his emotional, psychological, and physical health. They worked on coping skills to address his past trauma and PTSD symptoms. He got a new job, and was quite pleased and successful in his new work environment. His ART adherence improved and he regained virologic control. Aided by the steadfast support of his partner, Larry's sense of distress, emotional detachment, and related PTSD symptoms abated over time, and he felt an improved sense of connection with his partner.
Recognizing and treating co-occurring mental illness and/or substance abuse disorders are also essential to the successful management of trauma and PTSD. Enlisting the support of close friends and family, avoiding alcohol, drugs, and maladaptive coping strategies (such as denial and substance abuse), and challenging the sense of detachment and emotional numbness that accompany PTSD can make the initial steps to fostering a connection to a skilled health care provider easier. The provider can then assist with subsequent management and connection to treatment and support resources.
Post-Traumatic Growth (PTG)
While decades of research have focused on PTSD in response to traumatic life events, only recently has the concept of post-traumatic growth (PTG) emerged in the context of HIV and other medical conditions like cancer and rheumatoid arthritis.3 PTG describes the positive behaviors that emerge following a diagnosis of HIV or related medical condition. It has been linked to stronger social support, adaptive coping strategies, and favorable indicators of mental and physical health.
Following trauma exposure, people experiencing PTG may have improved relationships, a greater appreciation of life, and a greater sense of spirituality and personal strength.3 Moreover, in HIV-positive people, PTG has been linked to lower levels of depression, alcohol use, and substance abuse. Future study of PTG may enhance our understanding and inform our treatment approaches for those experiencing PTSD.
Traumatic life events and PTSD are incredibly common and widely under-recognized in people living with HIV/AIDS. An understanding of what constitutes trauma and an appreciation of symptoms of PTSD are essential first steps to successfully addressing them. Because trauma, PTSD, and co-occurring mental illness and substance abuse are so pervasive and so damaging across a range of self-care behaviors, risk behaviors, and HIV disease progression, it is imperative that knowledge and resources expand to properly identify and treat these conditions.
We must break the silence and recognize the insidious effects of PTSD on the lives of people living with HIV and their loved ones. Only with recognition and action can full emotional, psychological, and physical health and wellness be achieved by survivors of trauma.
Michael J. Mugavero, M.D., is an Associate Professor of Medicine at the University of Alabama at Birmingham (UAB), Associate Director of the UAB Center for AIDS Research (CFAR), and a practicing Infectious Diseases physician at the UAB 1917 HIV Clinic. He focuses on HIV health services research with particular emphasis on the influence of socio-behavioral and contextual factors related to HIV testing, engagement and retention in HIV medical care, antiretroviral medication adherence, and clinical outcomes.
- Brief DJ, Bollinger AR, Vielhauer MJ, Berger-Greenstein JA, Morgan EE, Brady SM, Buondonno LM, Keane TM; HIV/AIDS Treatment Adherence, Health Outcomes and Cost Study Group. Understanding the interface of HIV, trauma, post-traumatic stress disorder, and substance use and its implications for health outcomes. AIDS Care. 2004;16 Suppl 1:S97-120.
- Machtinger EL, Wilson TC, Haberer JE, Weiss DS. Psychological Trauma and PTSD in HIV-Positive Women: A Meta-Analysis. AIDS Behav. 2012 Jan 17. [Epub ahead of print].
- Sherr L, Nagra N, Kulubya G, Catalan J, Clucas C, Harding R. HIV infection associated post-traumatic stress disorder and post-traumatic growth -- a systematic review. Psychol Health Med. 2011 Oct;16(5):612-29.
- Pence BW, Mugavero MJ, Carter TC, Leserman J, Thielman NM, Raper JL, Proeschold-Bell RJ, Reif S, Whetten K. Childhood trauma and health outcomes in HIV-infected patients: An exploration of causal pathways. J Acquir Immune Defic Syndr 2012;59:409-416.
- Reif S, Mugavero M, Raper J, Thielman N, Leserman J, Pence B. Highly Stressed: Stressful and Traumatic Experiences among Individuals with HIV/AIDS in the Deep South. AIDS Care 2011;23:152-62.
- Sikkema KJ, Wilson PA, Hansen NB, Kochman A, Neufeld S, Ghebremichael MS, Kershaw T. Effects of a coping intervention on transmission risk behavior among people living with HIV/AIDS and a history of childhood sexual abuse. J Acquir Immune Defic Syndr. 2008 Apr 1;47(4):506-13.