Content/Trigger Warning: Talk of trauma, PTSD, and medical trauma
A young white woman has short dark red hair with bangs and long feather earrings. She is laughing and, with squinting eyes, looking away from the camera.
Hello, my name is Emily Parks, and I live with medical PTSD.
What is it, you ask?
The National Institute for Mental Health describes Post-Traumatic Stress Disorder (PTSD) as “a disorder that develops in some people who have experienced a shocking, scary, or dangerous event.” You may have heard about it with survivors of domestic abuse, victims of natural disasters, and veterans. Symptoms of PTSD can range from flashbacks or intrusive thoughts, heightened anxiety, sudden outbursts of anger, insomnia, and avoidance of the traumatic situation.
So what is medical PTSD? My working definition is a disorder in which a person struggles with recovering from experiencing or witnessing a terrifying medical event. Such events can range from medical interventions – such as being rushed into surgery after being air-lifted surrounded by providers hooking you up to wires and machines- to communication errors between patients and providers, such as a provider not taking a chronically ill person seriously.
Since infancy, I’ve lived with a rare intestinal disorder, so I’ve been in the hospital a lot, with all kinds of providers - good and bad. I don’t recollect any doctors not believing my symptoms or downplaying them as being less disruptive than they were. I could not tell you a specific instance where a medical professional held me down after resisting a needle poke. I can only remember one example of being coerced into doing a procedure I didn’t want. It’s all kind of fuzzy in my head. I remember realizing that it was hard to open up to and trust others at a young age. It was hard not to feel constantly judged. It was hard to let happiness in and stay awhile.
It took me decades to realize how much medical PTSD has impacted me. Through the power of denial, I refused to acknowledge that crying at the idea of going into a place as triggering as the ER was not typical. Heck, even going in for clinic appointments made my shoulders stiffen in anxiety. I would watch the clock, just waiting to escape.
It wasn’t until I started working in behavioral health that I realized my behavior could reflect PTSD associated with the healthcare system. The only issue: How do I avoid these triggering entities? The answer is, I can’t. I’m dependent on them. So how do I cope knowing I’ll never get out?
This is why I started POP!, or the Pissed Off Patients. POP! hosts bi-weekly discussion groups on all things medical PTSD-related. Don’t let the name deter you from checking us out. The name reflects that anger can be a positive emotion if one reacts to it appropriately. Many chronically ill patients feel as if they should be grateful for their providers at all times, even after medical errors. Anger can tell us when a situation is unfair. It can motivate us to make positive changes to improve the healthcare system. This can be accomplished by self-advocating in clinic appointments, coping with a new diagnosis, getting honest with providers, or navigating relationships, all while dealing with medical trauma. I hope you can join us at our next discussion group or give us a follow on Instagram: @pop_medicalptsd!
Bio:
Emily Parks is a chronically ill young professional based in the Washington D.C. area working in behavioral health and patient advocacy. She was diagnosed with short bowel syndrome in infancy and was unable to absorb nutrition orally. As a result, she was dependent on Parenteral Nutrition until receiving an isolated small bowel transplant from MedStar Georgetown University Hospital. In preparation for a Ph.D. in medical trauma, Emily founded the organization POP!. She hosts patient lead discussion groups on all things medical PTSD-related to learn what providers need to know about the mental health side of the patient experience. Find POP! online at POPMedicalPTSD.org!