We know that Post-Traumatic Stress Disorder (PTSD) is very real. A good working definition of PTSD is as follows: “an anxiety disorder initiated by an exposure to a discrete traumatic event that has generally occurred in the past ... and is characterized by symptoms such as re-experiencing, cognitive or behavioral avoidance of reminders of the event, and physiological hyperarousal"(Edmondson, 2014).
Scholars have long known that people who live with chronic illness are at a greater risk of experiencing PTSD-like symptoms. However, the trigger for these symptoms is not a one-time event that occurred in the past; rather, chronic disease is an ongoing threat to safety. Researchers thus have proposed a model of PTSD that accounts for this difference entitled the Enduring Somatic Threat (“EST”) model of PTSD. This blog post explains both the EST model and treatment recommendations.
Why the Link Between Chronic Illness and Trauma Matters
It’s estimated that 12 to 25 percent of people who experience life-threatening illness develop medically-induced PTSD (Edmondson, 2014). We know that health consequences of PTSD include diminished mental and physical quality of life. Of particular note is that PTSD produces neurobiological alterations — including higher inflammation levels — that negatively affect health (Koenen & Galea, 2015). PTSD also can affect adherence to medical treatment, as people who use avoidance tactics to manage PTSD symptoms are less likely to take their medication, implement lifestyle changes, and see their doctors for follow-up visits (Edmondson, 2014).
Medical Illness as a Triggering Event
Most traumas come from the external environment: a natural disaster, an attacker, a war. Medical trauma comes from within. Our bodies are the source of danger, and, as such, it can seem that a safe haven is not available to us (Edmondson, 2014). Shock, disbelief, terror, heightened anxiety about the future, and disillusionment in the medical establishment are prevalent (Cordova, Riba & Spiegel, 2017). Perhaps most salient is the changed understanding of our own vulnerability to pain, suffering and death. Our previous worldview — in which the world and our place in it were things we understood — has been shattered by illness, and our perception of safety has been altered irrevocably (Edmondston, 2014).
Re-experiencing is exactly what it sounds like: a mental re-living of the trauma. It can include intrusive thoughts, flashbacks and nightmares. For many people living with chronic illness, re-experiencing is particularly alive during interactions with doctors and hospitals. Driving by the hospital may cause panic; the prospect of both testing and treatment procedures creates tremendous anxiety. Some of us have particular memories — a botched procedure, a hospital stay in which our pain was unrelenting, an unsympathetic doctor. Others of us have fragments of memory that have not been processed and don’t make a coherent narrative; we only know that we are terrified.
Hyperarousal symptoms for chronically ill people often manifest as an intense awareness of bodily sensations. A fair number of the clients I see have been dismissed by their physicians as hypochondriacs; their acute attention to somatic discomfort is not properly identified as a trauma symptom. Difficulty sleeping and irritability are also hallmarks of PTSD hyperarousal.
Avoidance occurs as a way of managing the intense anxiety that accompanies re-experiencing and hyperarousal. We find ways to avoid the hospital. Perhaps we miss doctor appointments and fail to schedule follow-up testing. We also find ways of avoiding our bodies. Maybe we self-medicate with alcohol or “forget” to pick up our prescriptions. The fear that we experience when we think about our illness and feel its impact on us is so great that avoiding anything to do with it seems like the only way to manage.
An important side-note: Prior trauma increases the risk of illness-related PTSD (Cordova, Riba, & Spiegel, 2017). If you’ve had prior trauma in your life, including cumulative developmental trauma experienced in childhood, there’s a good chance that it’s going to come up again as part of your illness experience.
Treatment of Illness-Related PTSD
The EST model of PTSD recognizes that chronic illness presents an enduring rather than discrete threat. The dangers that we have experienced in the past due to our illness likely will re-emerge. Thus, treatment should focus heavily on developing coping skills. For some people, this will be pretty straightforward. For others, particularly those with developmental trauma, this will be more difficult.
A good psychotherapist can help you build coping strategies that will help you feel safer and more in control. Some of these strategies include self-talk, support networks, and multi-step plans to see you through medical crises. As you feel more in control, hyperarousal should decrease.
Good psychotherapy also will help you to diminish re-experiencing symptoms by supporting you in developing a narrative of your illness experience. Those fragmented flashbacks need to be named, felt, and placed into the story of your life in order to be integrated.
Finally, psychotherapy will address avoidance symptoms both behaviorally and emotionally. You deserve access to your body in a way that doesn’t always hurt, and a good therapist can help you find and maintain that access.
Researchers in this field have recognized something called “post-traumatic growth” (Edmondston, 2014). That is, people can and do use adverse events such as chronic illness to make positive changes in themselves, their relationships, and their worldview. In my own psychotherapy practice, it’s been my privilege to witness this growth in many of the chronically ill people I see.
What are your experiences of illness-related trauma? How are you managing these experiences? Please share in the comments.
Cordova, M.J., Riba, M.B., & Spiegel, D. (2017). Post-traumatic stress disorder and cancer. Lancet Psychiatry, 4(4), 330-338.
Edmondson, D. (2014). An enduring somatic threat model of posttraumatic stress disorder due to acute life-threatening medical events. Soc. Personal Pscyhol. Compass, 8(3), 118-134.
Koenen, K.C. & Galea, S. (2015). Post-traumatic stress disorder and chronic disease: open questions and future directions. Soc. Psychiatry Psychiatr. Epidemiol., 50, 511-513.