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The Patient Experience: Living with Medical PTSD

Posted by Emily Parks on Jun 28, 2021 8:30:00 AM

Hello, my name is Emily Parks and I live with medical PTSD.

What is it, you ask? According to the National Institute for Mental Health, post-traumatic stress disorder (PTSD) is “a disorder that develops in some people who have experienced a shocking, scary, or dangerous event.” You may have heard about it in relation to survivors of domestic abuse, victims of natural disasters, and veterans. Symptoms of PTSD can include flashbacks or intrusive thoughts, heightened anxiety, sudden outbursts of anger, insomnia, and avoidance of places where the traumatic situation took place. 

So what is medical PTSD? My working definition of medical PTSD is “a disorder in which a person struggles recovering from either experiencing or witnessing a terrifying medical event.” Medical PTSD, in my mind, divides into two groups. One is the emotional trauma one experiences due to the nature of the illness and necessary treatments, such as surgery. The other group of medical PTSD is the emotional trauma that occurs from poor provider-patient communication. Speaking from my own experiences, this trauma can come from recurring instances of a lack of communication. This can lead to patients feeling lost and disregarded in a vast healthcare system so much so that they could grow to distrust it, which could eventually lead to lower patient engagement and poorer treatment outcomes.

How did I come to learn about medical PTSD? Despite the fact that I’ve lived with a rare intestinal disorder since infancy and therefore was hospitalized numerous times, it took me decades to acknowledge this part of me. Through the power of denial and self-preservation, I refused to consider that crying at the idea of going into a place as triggering for me as the ER was not normal. Heck, even going in for clinic appointments made my shoulders stiffen in anxiety. It didn’t connect for me until I began working in behavioral health and learned about trauma-informed care. Trauma-informed care is the practice of acknowledging that everyone you know has survived a trauma in their life—your patients, your friends and family, even you. Accepting it destigmatizes the trauma, framing it as a common occurrence and shifting the focus to how one is going to cope the way their trauma manifests into behavior. 

So, what can healthcare providers do to help patients with medical PTSD? Read up on trauma-informed care and start incorporating it into your practice. Second, listen. Listen with your ears by making eye contact with patients instead of conversing while you look at a screen. It always helps me to repeat what someone is saying to me word for word in my head. Just as important, listen with your body language. Grab a seat or sit down on the side of the patient’s bed. Turn yourself to face them. Pause before you speak in case your patient has anything else to say.

Third, ask questions. A few years ago, a part of my medical action plan was to drink three cartons of Kate Farms nutrition formula a day in addition to being on total parenteral nutrition (TPN). One day, I just stopped the Kate Farms shakes, deciding I would pick it back up the next week. When I told my treatment team, the majority of them accepted this without question. Only one doctor asked me why and I replied with full honesty that my 14-year-old dog had died, and I’d been feeling overwhelmed since then and needed to cut a few things out for a week while I was mourning.

Again, ask questions. If your patient seems uncomfortable or confused about something, ask questions. If your patient is missing doses of medications, ask them specifically what makes taking your evening doses difficult. Good medicine comes from good rapport with patients, and once that rapport is built, the power of asking questions only makes the bond stronger.




Emily Parks

Written by Emily Parks

Emily Parks is a 27-year-old professional living on IV nutrition due to chronic pseudo-obstruction and short bowel syndrome since infancy. Her lived experience of collaborating with hospitals and healthcare professionals across multiple healthcare systems has provided her with insight on hospital management and administration, the power of conscious communication on access and delivery of care, and the economics of medical innovation. Emily serves as the Massachusetts Pilot Director for Health Advocacy Summit, a member of Young Adult Representatives of RDLA, and on the MedStar Georgetown Hospital’s Patient & Family Advisory Council for Quality and Safety. She currently resides outside of Washington D.C. working as a supervising vocational specialist within the disabled community while studying the impact of medical trauma and medical PTSD on patients and their treatment outcomes.