Medical PTSD: What is it

By: Emily Parks

Medical PTSD is a real thing and if left undiagnosed, it can heavily influence your treatment outcomes and take over your life. This is how to avoid that.

Hello! My name is Emily and I live with Medical PTSD. Let’s rewind a little bit, shall we? 

*cough* *cough* 

Hello! My name is Emily and I live with a chronic rare condition. More specifically, I have Myopathic Intestinal Pseudo-obstruction. This is where the smooth muscle in my intestines are weak and floppy and cannot digest nor absorb nutrients. Because of this, I was on Parenteral Nutrition or IV nutrition 10 hours a night, 7 days a week to maintain my weight. I went through all or primary school, college, and into my young adult years juggling this illness as it got increasingly worse. I was in the hospital and average of 3 to 4 times a year, developing liver scarring, and losing vascular access. For these reasons, I decided to get an intestinal transplant in Dec of 2020 at MedStar Georgetown University Hospital. It was a rough road with many secondary surgeries due to complications, but I’m happy to say that I’m back to work and doing what I love, studying Medical PTSD! 

Pss why does she keep bringing that up? What is it? 

When I think of rare disease, I think of the word “secretive”. There were a couple of reasons. Parts of my family encouraged me to hide my illness. I had a low sense of myself in the world. I had an ileostomy that I was horribly ashamed of and believed nobody could accept it and therefore nobody would accept me. Most importantly, I’ve been through a lot of medical trauma while navigating the healthcare system as a chronically ill person. 

My medical trauma influenced my treatment outcomes. I’d refuse to go into a clinic any more than once a month and once I got there I was filled with immense anxiety. My shoulders would stiffen, my heart would race, I was on the verge of fight or flight. OR I was completely numb and not focusing during clinic appointments. My medical trauma influenced how I see myself and my role in the world, it told me to shut up, it told me that no one cares. It taught me to be independent – which is of course good, but like…almost too independent. Like, lonely independent. I struggled with social anxiety and avoided letting people in. I was afraid to connect with other people out of fear of rejection. I was living a barely healthy lonely life. 

At this point, I was working in behavioral health learning more about trauma and what motivates people to take steps towards recovery. As I was hearing my clients’ accounts of trauma, how they developed it, and how it impacts their decisions today I felt “Well this all makes sense when you lay it out over the table.” I resonated with a lot of my clients and soon began looking inward and asking myself questions I would ask my clients. It soon lead back to my early childhood in the hospital. It went backed to me being held down physically. And then it all made sense. Why I was so avoidant of the hospital and doctors. Why I would emotionally numb myself and watch the clock to leave as soon as possible. I was showing sighs on PTSD and trauma, specifically related to the healthcare system. 

I also wondered if I was alone. I started searching around looking for support groups or research or anything. Nothing. Zero. No support groups. I have to say that I created POP!, my new organization, out of frustration! POP! stands for Pissed Off Patients, 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. 

Because there is little research on Medical PTSD, POP! offers a definition of  “…a disorder in which a person struggles recovering from either experiencing or witnessing a terrifying medical event. Such events can range for medical interventions required for survival to communication errors between patients and providers.” This means that more subtle interactions, such as not being believed or being told symptoms are psychosomatic, can be a source of trauma. 

As of right now, POP! offers biweekly discussion groups on all Medical PTSD related. Topics range from flashbacks to trusting doctors to dating to self-advocacy. I also present to medical students on what Medical PTSD is and how it can affect treatment outcomes. I’m thrilled to say that there is more coming down the pipeline included, but that’ll be my little secret for now.

My ultimate goal is to get a PhD in medical trauma; however I’m not in a place health wise where I can do so. In two years, I plan to be working full throttle collecting data in one-on-one patient interviews built from an already existing PTSD survey, only tweaked a little to make it more medically focused. I hope to be part of a research team of doctors analyzing data and publishing the results. In five years, well, I hope to be in a PhD program! Although I won’t be able to use the data I collected prior to starting a program, I believe it will be an excellent learning exercise!

So what would I say to my younger self, knowing what I know now? 

Well, Emily, you have a plan. Stick to it. It is becoming clearer and clearer to me that there is nothing else like this out there. Get through the hard times. Don’t give up. It’ll be good for processing your own Medical PTSD and helping others. 

Second, Emily, swimsuits were the worst. They just are. All the other girls may be wearing bikinis and right now, you simply can’t do that. You won’t allow yourself. I know it is VERY hard to find a one piece that fits and doesn’t look like I stole wine from a convenience store. You don’t always have to say yes to invites, or you can say yes and wear a cute outfit instead of a swimsuit. But there is good news: girl, you are getting that transplants! After so many years hiding your body, the universe will somehow turn it around and give you that flat belly you always wanted. You will be called “model” over and over again by the sweet old lady at your dance studio (btw, she also says you have a great butt ayyyeee) Most importantly, once everything is healed and all foreign objects are removed, you will be able to start experimenting with bikinis! And MIGA Swimsuits will be right there for you!