Heya! It’s really nice to meet you and thank you for checking out POP! A little bit about me, I’m a lifelong patient and rare disease warrior! I was born with a gene mutation which caused the muscles in my GI system to be incredibly weak, most predominantly in my intestines. Being unable to absorb anything I ate, I was dependent on Parenteral Nutrition (PN) at a young age until I received an small bowel transplant in 2020. I am now happily off PN, and the nasty complications is gave me, but new to the post transplant world. As I was navigating the healthcare system, both pre and post transplant, I became more acute to how I rarely I felt safe and connected in my social environments. I struggled with fitting in at school as well as with my peers as a young adult. Most notably, I noticed how anxious, strung tight, and shut down I felt when seeing my clinicians or really being in any hospital setting at all. I felt like my voice was unheard and whatever is going to happen to me in the hospital was out of my control, so why even speak up? I became more and more disengaged in my own healthcare as I shut down more and more, despite my condition worsening. I started learning more about PTSD through school and work and began to see myself in the narratives I was reading. Often when we talk about PTSD, we think about war veterans or survivors of domestics abuse…but could healthcare be seen as a traumatizing event? I mean, why not? A surgery is a pretty big deal for anyone and I’ve had more than I can count of two hands. Is it possible that some of those events were traumatizing and are now seated in the back primitive parts of my brain? And if its possible that it’s happened to me…what about others? Could Medical PTSD be a real thing?
What People Are Saying
“It has always been difficult for me to discuss my medical experiences, especially, the traumatic ones. Partially because I feel guilty that so many have had it much worse and it makes you feel vulnerable. POP has created an open and non-judgmental space to talk about it. Our experiences as patients come in all shapes and forms and POP recognizes and embraces this for everyone that joins. I especially love that the group is working to make these stories and lessons visible to medical students and healthcare practitioners.”
— Tasia, Rare New England
“For much of my life therapists told me that I MUST be suppressing sexual trauma in childhood. For the first time in 44 years, your group showed me the connection between medical trauma and how that affects my relationships with others.”
— Sarah, The Dreaded Advocate
“Emily has created a safe space to talk about something that doesn’t get brought up enough in the chronic illness community. I am so thankful to be a part of a group that is making strides toward helping patients heal from Medical Trauma. Emily has created a safe space to talk about something that doesn’t get brought up enough in the chronic illness community. I am so thankful to be a part of a group that is making strides toward helping patients heal from medical PTSD!!”
— Nancy, Standard of Care
“POP! groups are a great way to connect with other patients and feel less alone. Dealing with chronic illness can be an extremely isolating experience, and every pop meeting I have attended has made me feel connected and seen.”
— Celia, Agirlwithbaggage Blog