Do You Have PTSD And HIV?

Living with a chronic condition like HIV can sure pack an emotional wallop. Not one but repeated emotional wallops. Over time, those wallops can wear you down, and impact your wellness – physical, emotional, spiritual. 

One potential outcome is Post Traumatic Stress Disorder, known as PTSD. I know that’s a scary term. And believe me, my intent is not to scare you but to alert you to a potential condition and, more important, inform you about what you can do if you are concerned that you or a friend might be experiencing it. 

Research has shown that individuals living with HIV can and do experience PTSD. So two important points to being with: PTSD is treatable! And you are not alone! 

What Is PTSD?  

We generally think of PTSD in regard to men and women serving our country in the military. There’s a good reason for that. PTSD is an ongoing issue for those who have been in war zones. 

So, I am going to give you first the traditional definition of PTSD, followed by what PTSD means when it is caused by the experience of living with a chronic condition like HIV. 

Basically, PTSD is caused by exposure to a traumatic event. After this event, individuals with PTSD continue to be stressed or frightened even when they are not in real danger. The classic example of PTSD is someone who hears a noise and has an extreme reaction, as if exposed to danger when, in reality, they are not. 

Symptoms of PTSD can result soon after the original traumatic event, or they may develop months or even years later. For a diagnosis of PTSD, the symptoms must last more than one month. And they must be severe enough to interfere with daily functioning, like going to work and basic self-care, and relationships. 

What Are the Symptoms of PTSD? 

PTSD is a serious diagnosis and it not made haphazardly. Mental health professionals have a very specific set of symptoms they assess before they determine that an individual is suffering from PTSD. 

Here are examples of symptoms that are associated with PTSD:

Unwanted memories

Loss of pleasure

Extreme reactions to reminders of events experienced as traumatic

Irritability

Changes in thinking or in mood after a event experienced as traumatic

Self-blame

Anxiety that occurs in anticipation of an event 

Sleep difficulty

Anxiety about doing the right thing

Isolating oneself from other people

Keep in mind that these can be symptoms of stress, or anxiety, or of other mental health conditions. Again, only a mental health professional who has been specifically trained to diagnose and treat PTSD can make this diagnosis. And again, the diagnosis is made based on the presence of multiple symptoms in a specific combination. All the more reason not to attempt to self-diagnose. 

The Cause of PTSD Can Be Cumulative

This is a really important thing to keep in mind for individuals living with a chronic condition. 

Receiving a diagnosis can in and of itself be experienced as a traumatic event. In that case, the cause and effect are clear.

But notice that I use the term “experienced as a traumatic event.” That’s important to keep in mind if you or a loved one has a chronic condition. The stress of events that are at face value are relatively minor can build up over time. At some point, one relatively simple event can be what my mom use to call, “the straw that breaks the camel’s back.” In other words, if you are constantly in situations that result in stress, you may find yourself less and less able to cope. You may just be worn down emotionally over time. Consequently, at some point, you may begin to experience these events as traumatic. 

Here are some examples of events that can, over time, lead to a trauma reaction:

Running out of your medication  

Getting rejected after disclosing your HIV status

Problems with insurance coverage

Flu or a virus that just doesn’t seem to want to go away   

Having to find a new doctor

Uncertainty, like financial concerns

An uphelpful medical professional

I suspect you have experienced one or more of these events. And you probably have your own coping skills to help you get through them. But over time, experiencing one after the other, if not at the same time, you may find yourself less able to cope.

Here’s what I think of as the PTSD mindset: HIV can start to feel over time like a lurking enemy, and you may perceive yourself is being under siege, an ambush right around the corner. You may find yourself being what therapists call hypervigilant, constantly watching out for signs of attack. On the other hand, denial of emotions, feelings that are pushed down and not acknowledged, but tearing you apart inside, can also contribute to PTSD. 

Why Would I Experience PTSD?

In other words, why me and not you? Or, why you and not me?

There isn’t any one answer to that question. Susceptibility to a diagnosis of PTSD is based on a range of factors. These factors include:

Your basic personality make-up    
The number of events
The frequency of events
Your overall coping skills. Some of us are more resilient than others
Your relationship with the healthcare professionals you are working with

What I want to emphasize is that PTSD is a mental illness. And like a physical illness, it is not something you choose. It does not occur because you are weak. And most important, it is treatable. 

Another Caution: Your Partner or Family Members Can Also Experience PTSD

In my own clinical experience, I am often as concerned about the mental health of loved ones, if not at times more concerned, as am I about the person living with the condition. So if you are a partner or family member of someone living with HIV, monitor yourself for signs that your ability to cope day-to-day is at risk. 

What Can I Do? First, Reach Out to a Mental Health Professional

When I write mental health articles, I usually provide guidelines regarding what you can do to help yourself if you are experiencing whatever issue I am discussing. But I am reversing that order for PTSD. As I described, PTSD can have a major impact on your day-to-day functioning. It can not only interfere with your quality of life, it can affect your functioning to the point where it is difficult to effectively the cope with the demands of everyday life. 

If you suspect you are experiencing PTSD, it’s really important to reach out to a mental health professional – counselor, social worker, psychologist, psychiatrist. A trained clinician would have a talk with and evaluate your symptoms, talk to you about what’s going on, how you are feeling. After talking with you, a clinician will make a diagnosis. And them work with you on a treatment plan for the road ahead. 

Again, your first step is reaching out to a professional.

Most of All, Stay Supported… 

If you’re living with HIV, you already know the value of staying connected to your support network. If you are experiencing strong emotions, and especially if you suspect you are experiencing PTSD, it is especially important to get emotional support. Professional support. Family support. Friends. And other members right here. The same if you are caregiver. And if you are a family member of someone you suspect may be experiencing PTSD, it’s important to get support for both your loved one and for yourself. Don’t go through this alone! 

You, your HIV, and your mental health. You’re dealing with a lot. And one stressful situation followed by another can take a big toll on your mental health. If it’s all starting to wear you down, do the bravest thing in the world and ask for help. PTSD, like other mental health conditions, is treatable. Don’t go through this alone!      

Gary McClain, PhD, is a therapist, patient advocate, and author in New York City, who specializes in working with individuals diagnosed with chronic and catastrophic medical conditions, their caregivers, and professionals. He maintains a website, www.JustGotDiagnosed.com.