4 Ways My Medical Trauma Didn’t Look Like 'Classic' PTSD

Here are four ways I found my trauma symptoms were different from how post-traumatic stress disorder (PTSD) is defined in the DSM-5:

• What is PTSD?

1. I didn’t have flashbacks or nightmares of a specific event.

I was only 2 years old when I was first diagnosed with immune thrombocytopenia (ITP) and I have no memory of what happened to me during my hospitalizations. I only have stories from my parents. Unfortunately, the immobilization, pain at the hands of primary caregivers and sedation I experienced likely contributed to me developing trauma symptoms. As an adult, I finally saw a neuropsychologist and was diagnosed with “other specific trauma-related disorder” rather than PTSD. In understanding my diagnosis, I started researching what medical-related traumatic stress symptoms look like and how they manifest. I came across an article on the enduring somatic threat model proposed by Donald Edmondson, Director of the Center for Behavioral Cardiovascular Health at Columbia University. Finally, the reason I never got a PTSD diagnosis made sense. This model was so helpful to me in recognizing the ways medical trauma has affected me. I eventually understood that the bizarre sense of “numbness” and childlike helplessness I get in the ER and infusion room, along with the feeling of being very cold and shaky, could be a symptom of trauma. I had no specific event to “flashback” to — only many nightmares related to my body falling apart and strange sensations that seemed to come out of nowhere.

For many reasons, survivors of medical trauma may not have the hallmark PTSD symptoms of repeated flashbacks and vivid nightmares of a specific threatening event. Even if deadly, many illness diagnoses like cancer unfold slowly, ­and there may be no particular moment that patients relive. According to Edmondson, “The traumatic character of the cancer experience does not reflect the horror of a discrete event, but rather arises from an often years-long experience of vulnerability, pain, and fear.” Others may have been unconscious in the ICU or too young to process the traumatic experience.

2. My triggers come from inside my own body.

It took me a long time to recognize my own body was full of panic triggers and was the primary source of them. Skin changes, tiny cuts, a headache, fever, even darker urine than normal all trigger anxiety attacks. Bleeding episodes can escalate into panic for me, complete with skyrocketing blood pressure, leaving me curled up on the couch caught in circular thinking of whether or not I’m dying and if I should call my doctor or go to the ER. But it was so hard to tell these were panic triggers because I was used to thinking of PTSD as being about a fear of things in your environment; I didn’t have panic about the hospital environment or about needles or blood tests.

In the case of medical trauma, everyday bodily sensations themselves can become panic triggers, even if they are benign or non-serious. Edmondson calls these triggers “somatic cues of threat,” and unfortunately for us, it is not possible to fully find a safe haven from them. Internal panic attack triggers often are intertwined with increased body vigilance: being sensitive to things like heart rate, tingling in the hands and feet or any other bodily sensation. Since excessive body vigilance can also be associated with obsessive-compulsive disorder, getting an accurate diagnosis from a qualified mental health professional is important.

3. My hypervigilance might be totally rational.

A certain amount of hypervigilance (and hyperarousal) is almost unavoidable when you live with a chronic condition. It’s tough to tell myself that things I notice about my body are “just anxiety” when the initial signs of my platelets tanking are things like bleeding when I brush my teeth or having more bruises than normal. It’s hard to tone down the vigilance when my own medical team wants me to report frequently on my symptoms and get regular monitoring. For those of us living with chronic conditions, many of our day-to-day activities are driven by preventing another serious episode from occurring and involve constantly checking and rechecking symptoms, medications and test results. All of these tasks, as Edmondson states, “are potent reminders of ongoing vulnerability, and of the original trauma.” And because the bodily threat is real, they are rational responses. It’s a balancing act to figure out when this type of vigilance isn’t adaptive and helpful anymore.

Something else Edmondson and others have noted is that survivors of medical trauma are less likely to follow their doctors’ guidelines about treatment. The cause of this tendency is unknown, but one theory is that treatment is an ongoing reminder of past traumatic experiences and the potential for future ones. Ironically, the cure can become associated with the threat that caused PTSD in the first place. This kind of avoidance behavior is one way that medical trauma is similar to more “classic” PTSD.

4. I’m stuck in the future, not in the past.

All of the trauma symptoms I experience have their root cause in the fact the threat of mortality is still present, ongoing or may return. My intrusive thoughts and fears don’t focus on past trauma at all but instead consist mainly of fears about the future. So, if you feel in a panic but aren’t particularly troubled by memories of what has already happened to you, you’re in good company. Some common intrusive thoughts, according to Edmondson, are fears of dying, fears of disease progression and anxiety about upcoming appointments and treatments. I think about dying on a regular basis, to the point where I’ve often assumed my parents will bury me. I live in fear I will have complications from being asplenic, hit my head and have a brain hemorrhage, have a bad infusion reaction or stop responding to treatment entirely.

How can we prevent and recover from medical trauma? Research shows that just like in other types of trauma, being able to fully process sensations, emotions and memories is important. Patients in one study who kept an ICU diary or had family keep one for them had fewer PTSD symptoms. The use of benzodiazepines and continuous sedation has also been shown to result in a higher incidence of medical PTSD, as it keeps patients from being fully aware of what is happening to them and may cause frightening hallucinations. Cognitive behavioral therapy (CBT) and acceptance and commitment therapy (ACT) were so helpful to me in recognizing, managing and reducing intrusive thoughts and hypervigilance. When an ongoing threat to your bodily integrity is very real, dealing with traumatic stress symptoms is hard. Recognizing the fear and vulnerability I felt were valid and worthy of care was the first step in me seeking help for my traumatic stress symptoms.

Further Resources on Medical Trauma

National Cancer Institute: Cancer-related post-traumatic stress (PDQ) Patient version.

National Child Traumatic Stress Network: Medical trauma.

Critical Illness, Brain Dysfunction, and Survivorship Center: Post-Traumatic Stress Disorder.

A version of this article was previously published on Muddy Paw Therapy.