NMO, Medical Trauma, and PTSD
Did you know that you can become traumatized by a medical event or related situation and get PTSD? Yea, me either, until it happened to me. As many of you may know, it was no walk in the park getting to a diagnosis. Even worse, when I did receive a diagnosis, it happened to be an incredible rare and incurable disease.
Let's talk medical trauma and PTSD
Medical Trauma and Medical PTSD are often used interchangeably to describe the same disorder however they are actually not the same. Rather one causes the other. Here is the breakdown:
This is trauma that occurs in a medical setting. While not an official diagnosis itself, medical trauma can lead to conditions like PTSD, anxiety, depression, or chronic pain.
This refers to symptoms that meet the criteria for post-traumatic stress disorder (PTSD) originating from trauma in a medical setting.1
What does medical trauma look like?
While many settings and experiences can trigger stress for people with medical trauma, some common ones are:
- doctor’s offices
- dentist’s offices
- places with bright lights
- being touched
- specific scents, like the scent of disinfectant
Some symptoms and signs of medical trauma include:2
- panic attacks
- feelings of rage or shame
- substance use
- eating disorders
- compulsive behaviors like exercising or working all the time
- more or less sensitivity to surroundings than usual
- sleep problems
- gastrointestinal issues, like nausea or indigestion
- skin rashes
- chronic pain
Where my trauma began
We all have that point of no return that starts a trend of bad memories and feelings that we will never quite let go of. For me, it all started 7 years ago when I had my first NMO attack. At the time, I did not know that what I was experiencing was NMO, and neither did any of the doctors I encountered including a neurologist. Unfortunately, I lived with the side effects of the attack for 7 years before I was jolted right back into the same traumatizing situation. Even worse, this attack was really bad and damaging. To be in a situation where I'm suffering so badly and being treated so poorly by medical professionals, resulted in my medical PTSD.
The benefit of a medical ally
A medical ally might be someone who’s well-versed in your needs and wishes and may be able to act as a buffer between you and a healthcare professional if your needs aren’t being respected.3 This person might also be referred to as an advocate. They may be a caregiver, friend, family member, or whomever you chose that you can trust to make educated decisions with your medical care. Having an ally or advocate can make a significant difference in how you are being treated by medical professionals.
How I've managed living with the trauma
It's been such a disappointment to feel on edge when it comes to medical care. It makes it even harder living with a chronic condition that requires me to see doctors on a more than regular basis. This is why I've chosen to advocate for myself. For my own protection, I take the time to learn about NMO and anything else that may be affecting me so that I can ensure I'm receiving the appropriate treatment and care. I want to feel safe and trust the doctors and sometimes I can. However, I live in this body, with NMO. I deal with the daily effects of PTSD. I know what I feel and say is true therefore, by advocating, I do not have to just "deal" with the outcome. I control my narrative.
What I've learned from these experiences
Every beginning has an end and I've learned that this is a lifelong deal. Not only that, I also never knew how many people would be able to benefit and be helped by my advocacy. What a winning situation! I chose to face my PTSD and use it as an opportunity to continue to help others along with spread awareness. To this day, I haven't met one person with NMO that didn't have a traumatizing story to tell. For that reason, I continue to advocate.
Were you misdiagnosed, prior to being diagnosed with NMOSD?