Trauma and HIV

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Several studies have shown that experiences of trauma are much more common among girls and women living with HIV (HIV+) than among those in the general population. So what is trauma, and what is its relationship with HIV?  

What Is Trauma? 

Trauma generally refers to a deeply disturbing or distressing experience – something that involves serious injury or emotional wounding. Trauma can result from a situation, an event, or a series of events that you experience as physically and/or emotionally harmful.  A traumatic experience can have long-lasting negative effects on your regular ability to function as well as on your mental, physical, social, emotional, and spiritual well-being.

A key thing to understand about trauma is that it is your experience of an event or situation as deeply disturbing that makes it traumatic.  Different people will have different experiences of the same event.  While some people will find a particular situation traumatic, others may not find it as distressing and not be as affected by it.

Examples of potentially traumatic life experiences include:

  • Natural disasters, such as hurricanes, floods, fires, or earthquakes
  • War or political violence, including being forced to move (refugee)
  • Sudden violent or unexpected death of a loved one (e.g., murder, suicide, accident, heart attack)
  • Death of a parent
  • Physical, emotional, or sexual abuse (e.g., domestic violence, intimate partner violence, sexual assault, rape, incest)
  • Serious injury, illness, or accident (e.g., severe burns, cancer, car accident)
  • Childhood neglect (when basic needs for food and/or shelter are not met)

There are also some factors that can increase people's vulnerability to trauma. Having recently suffered losses or already being very stressed when a new event occurs can increase the likelihood that you are traumatized by that event. In general, people are more likely to be traumatized if they've been traumatized before. This is especially true if the previous trauma occurred during childhood. When a child's sense of security or safety is threatened, she or he may grow up seeing the world as an unsure, dangerous, and frightening place.  This can cause the child to develop emotionally and physically in ways that make it easier for her/him to be traumatized by future situations.

"Everything happened when I was six years old that I lost my mother and then I stayed with my father. I was nine years old; I was being abused by him – sexually. Well I was being abused until I turned 12 years old.
~ Marta Z., Christie's Place

"We grew up in an alcoholic home and an abusive home. I remember as a child witnessing my mom getting beat up and going to jail and being drunk. It was so normal that, you know, we didn't think nothing of it. That was just a daily part of our life… So at the age of 12 I started smoking weed. When I was 12 that was also the year my father died, which was very, very hard for me… I was sexually assaulted by my stepbrother when I was about 12 or 13 as well…
~ Jay B., Christie's Place

Post-Traumatic Stress Disorder (PTSD)

Most survivors of trauma have some stress-related reactions after a traumatic event.  This is normal, and most people feel like themselves again with time.  However, some people have stress reactions that do not go away and may even get worse over time.  These people may have PTSD.  PTSD is a mental health disorder that includes four types of symptoms:

  • Re-living or re-experiencing the trauma in the form of nightmares or flashbacks (intense memories of past events), or when triggered by reminders of the original experience
  • Avoiding or staying away from people, places, or activities that remind a person of the original traumatic event
  • Feeling keyed up, on guard, jittery, or irritable. The body and mind remain hyper aroused, or hyper vigilant, which can lead to trouble sleeping or to startling easily (e.g., jumping sky-high when a balloon pops)
  • Changes in mood and thinking (e.g., depression, anxiety, problems with memory, difficulty concentrating).  These often include losing interest in once pleasurable activities, a sense of being detached from others, trouble experiencing a full range of feelings, and feeling constant shame, guilt, or horror.

PTSD can be a very disabling disorder, as it can lead to problems with substance abuse, job stability, parenting, and social and familial relationships.

Effects of Trauma

You may be wondering how this topic affects you, especially if you do not have PTSD.  It is important to remember that it is our experience of an event that makes it traumatic, and you do not have to have PTSD to suffer from the effects of trauma.

By definition, trauma results in lasting negative effects on a woman's ability to function in the world – physically, mentally, emotionally, socially, and/or spiritually. See if any of these effects ring true for you.  Trauma can affect a woman's:

  • Worldview and perceptions of safety (e.g., the universe as a generally safe, friendly place versus a threatening, hostile place)
  • Purpose and personal identity:
    • her identity as a woman, mother, partner, community member, student, professional, etc.
    • her goals and dreams, and how much a woman feels she has the ability to make things happen in her life 
  • Relationships with others: how a woman shows up in friendships, work relationships, intimate relationships, family relationships; decisions about which relationships to pursue as well as how close or distant to be in them
  • Health and well-being: Trauma has negative effects on women's overall health.  For women living with HIV, a history of trauma or PTSD can lead to higher rates of non-adherence to HIV drugs and consequent treatment failure, higher rates of death, and poorer quality of life.
  • Emotional awareness and expression: Because emotional responses to trauma can be so overwhelming, women who have lived through trauma sometimes regard having emotions as unsafe. This can lead them to have trouble knowing or talking about what they feel, become easily overwhelmed by feelings, feel angry at themselves when they have feelings, feel numb, or feel angry at others when they feel vulnerable. Not being aware of or able to express feelings can negatively impact women's abilities to make good decisions, act effectively, and have healthy relationships with others.

And then after that I came to the United States to live with one of my sisters. And when I was staying with her, I was also being abused by her husband… So I left.  That's when I started drinking – so bad. Real, real bad… Then I went to this other city where I started prostituting myself. Because, you know, I needed to survive. That was the only way that I can make it... because I didn't have no spirits at all.
~ Marta Z.

So I got into heavier drugs in high school and I would have lots of sex partners – I was just trying to find that love in my life and acceptance… So I would have sex at the drop of a dime… And along with that came those partners that beat you and want to control you, and I accepted all that 'cause I thought it was love. I thought that men that put their hands on you, if you didn't do that, you didn't love me…
~ Jay B.

What Does Trauma Have to Do with HIV?

UNICEF reports that approximately one in four girls has experienced physical violence by the age of 15 – that's close to 70 million girls worldwide. One in ten has experienced sexual violence. The United Nations estimates that girls and women who are beaten by their partners are almost twice as likely to be infected with HIV.

In the US, women living with HIV report having been physically or sexually abused as children twice as often as HIV-negative women. Similarly, more than five out of ten women living with HIV (55 percent) report experiences of intimate partner violence – twice as many as the national rate. Almost one-third of women living with HIV suffer from post-traumatic stress disorder (PTSD), which is five times the rate among women in general. For more information on the connection between violence against women and HIV, see our fact sheet on Violence Against Women and HIV.

These traumas are often kept alive or worsened by the stigma, discrimination, and bias experienced in health care settings and women's home communities. The systemic effects of discrimination on the basis of race, sexual orientation, gender identity, social status, or age can add to women's individual burdens and increase their chances of experiencing trauma again.

Recent studies have also shown that the trauma experienced by women living with HIV often has serious negative health effects regardless of whether the trauma occurred before or after women learned they were infected with HIV. One study found that women living with HIV in the US who had suffered recent trauma were more than four times more likely to experience HIV treatment failure and not remain virally suppressed. Women who had experienced recent trauma were also almost four times more likely to have sex with someone whose HIV status they did not know and with whom they did not use a condom. Without the ability to maintain viral suppression, HIV disease gets progressively worse and women's health declines. In addition, people living with HIV who are not virally suppressed can spread the infection to others more easily, especially when they have unprotected sex.

I told him that I was pregnant… and then two days after that they called me back from the clinic and they told me I was HIV-positive... I thought I was gonna die… I give myself an opportunity and I stopped using drugs and I started on my medication for HIV.  And it did work.  So when my daughter was born, she was born negative.  And that was my miracle… And I started learning a lot. I started learned that I was not going to die from this. And I started learning that if I get informed, I can help others.
~ Marta Z.

At 28 or so I got really sick… and so he gave me the test and put me in the hospital and came the next day to tell me I had AIDS… I was devastated… My husband passed away in 2005, and that was the beginning of my end in that world so I just wanted to die… In 2006, I got into recovery. I went to a drug treatment program and that was the best decision I ever made in my life. It allowed me to work on my issues regarding my HIV and my substance abuse and my abuse as a child.
~ Jay B.

You Can Recover from Trauma

The good news is that, even if you have experienced recent or past traumatic life experiences, these events do not have to determine your destiny.  It is possible to heal from trauma, to establish a sense of safety in your life, and to change the health of your body, mind, and relationships.

First, it is important to understand that you do not have to do this alone. There may be professionals in your community who have specific training on trauma recovery who can help you; to search in the US, click here. There may be support groups you can attend to meet others who are recovering from trauma. These groups provide safe and supportive environments where you can discuss how trauma has impacted your life and learn from others' journeys of recovery. Online communities (e.g., A Girl Like Me) and groups also exist as good sources of connection, information, and support.

In addition, online resources like this one can provide you and your family members with information about trauma and recovery. Lastly, there are organizations dedicated to trauma recovery and the social justice issue of violence against women and girls with which you can connect.  You may find it helpful and empowering to volunteer your time with one of these organizations, and to use your own experiences as a way to help others who have similar life experiences.

The Well Project would like to thank Erin Falvey of Christie's Place for her assistance with this article.

Additional Resources

Select the links below for additional material related to trauma and HIV

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