Trauma is a deeply distressing or disturbing experience, especially personal traumas like the loss of a loved one. But what about the times when it’s not the death of a family member, but the loss of our former selves? The self that ran a 5K just three years ago. The self that horseback rode every. single. day.
When I received my diagnosis, I had waited so long for that moment. I walked into the physician’s office, anxiously pulling my fingers out of place in anticipation of the words, “I don’t know.” But that wasn’t the case. This doctor walked in with a kind smile, but his attention was immediately pulled to my crackling fingers and unusually stretchy skin. Now, if you’re like me, you know that he was looking to score me on the Beighton Scale of Hypermobility. I couldn’t have been more right. He told me to bend my thumb to my forearm — easily completed and I scored points. He told me to put my hands on the ground in front of me while keeping my knees straight — not an issue.
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Then, he took out his phone and took a picture of me and said, “I can’t wait to show my colleagues, I’ve found another one.”
While I found that part a bit rude, I knew what he was getting at. I was smiling. I tried not to look too happy since he was about to tell me I have Ehlers-Danlos syndrome (EDS), but I had known I had it for five years. I knew good old EDS and I had some similarities, but I had been waiting for this moment. Within five minutes of meeting this stranger, he diagnosed me and changed my life forever.
I was expecting to feel joy; I was no longer undiagnosed, I had something. There was finally a name, not just a list of random symptoms that somehow fit together but were also completely independent. But I did not feel happy.
I was immediately bombarded with new restrictions, telling me I could no longer run, that I had to do ‘light’ activities, slow down the progression of arthritis which was already occurring in my 19-year-old body. I wanted a diagnosis that would consist of a two-week treatment and I would be back to “normal.” I couldn’t have been more off. I was told to order a bunch of books and learn all about the condition so I could figure out how to give my body peace.
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The whole appointment consisted of 15 minutes, brand new instructions, and left me crying in tears. There was no smile on my face. Unfortunately, this was not the first experience that ended in tears.
I wanted to share this piece taken from a longer recollection of medical trauma that I have encountered. Although it is very hard for me to share this, I know, and I want others to know, that they are not alone. Trauma in the medical community, especially the undiagnosed and rare and chronic illness community is unforgivable and obscene. But know you are not alone — that is what I hope to accomplish by sharing my experience.
To physicians everywhere:
I am unapologetically me. I suffered at the hands of our medical system. I am only 20 years old and this all began when I hit puberty. I was not a kid who spent a lot of time in the hospital when I was younger, so when it all happened so suddenly, I was traumatized.
I have had family members who have gone into the hospital and never come out. I’ve lost so much of myself through this medical journey, only to be told there was nothing that could be done.
Imagine if that were you.
I know that’s hard to do — putting yourself in someone else’s shoes, but just imagine. Try to imagine being so scared to step foot in a hospital that your heart rate spikes to 180 bpm. Then, imagine being shoved into an MRI machine and throwing up because you’re so scared. You’re wondering if your headache is just a headache, or if that sudden loss of vision was a stroke or brain tumor. Think. You immediately get to see the results of our blood tests, MRI and CAT scans, we don’t. We wait in agony at home and jump every time the phone rings because we are so anxiously awaiting the phone call that determines if my headache was just that or something fatal.
I was told that most physicians have to undergo the medical tests that they perform on their patients. Let me ask you, did you really have a needle shoved into your spine seven times? Were you traumatized by the immense chest pressure that felt like a heart attack?
Do you think about us when we’re not there? You should.
You should think about every utterance, everything that you do and how it affects us.
How the progression of my disease takes a toll on me emotionally.
How it affects my family.
Please, acknowledge when you are not capable of performing a procedure and ask for help. Think about how your actions affect us, your patients, in the long run. Treat me as if I were your child, or at least someone that you cared about. Please.
All I ask is that you think about your actions and how they affect us. I am traumatized and I am not afraid to place the blame on you. I did not traumatize myself. It was you. It was your careless actions and lack of regard for my feelings that led to years of therapy, a PTSD diagnosis, night sweats and a fear of falling asleep because I know my mind will go back to that dark place.
I would also like to express my gratitude towards those physicians, nurses, physician assistants, and everyone else who showed empathy towards me, was patient with me and kind to me, and especially to those who have held my hand when I was crying from fright. Thank you.
I remember you. I appreciate you. We need more people like you.