Do you deal with the effects of medical trauma?
Have you been told you need to get over it and suck it up?
Is medical trauma real?
It started out gradually, one day I noticed my arm was aching and it hurt to write or to be on the computer. Pretty soon, I had a stabbing, unrelenting pain that spread to my neck and shoulder blade - it left me in tears and unable to sleep well. Before long my forearm was screaming in pain and my hand was numb and tingling.
I approached it in the ‘tried and true’ method of just ignore it and it will go away. No luck. I tried resting it but that didn't help either. Soon the pain was so bad I couldn’t use my arm and even walking was uncomfortable.
“Please don’t let this be another cervical disc and stenosis problem or Parsonage-Turner Syndrome, a rare neurologic disease,” I muttered to myself. My cervical fusion in Aug 2019 had gone well but it was a tough recovery and I really didn’t want to repeat that. For several years prior to that, I had dealt with PTS which is excruciatingly painful with nerve damage and function loss, with no treatment other than time (often up to a year to regain function) and a pat on the head that ‘it isn’t that serious'.
So, it finally got bad enough I knew I needed to do something - I was now having problems sleeping and eating. I was PCP-less (a story for another day) but I knew I needed help and honestly, I was getting scared it was something serious.
I decided to find a PT but I needed a ‘thinking PT’ to help me figure it out. You know, the kind that doesn’t follow the cookie-cutter approach to injuries and treatments.
But how to find the right person? Luckily, I had met a fantastic PT (a recommendation from a rare disease friend) who helped me after my concussion last year and she recommended a PT. I found an awesome person to work with - whew, what a relief!
Turns out I have a weak and atrophied shoulder muscle that is causing my issues. Exercises, dry needling, and some Kinesio tape and 2 weeks later I’m 85% better.
Great outcome, Patti so why is this post about medical trauma?
Well, I tore my rotator cuff and had surgery to repair it in 2014. Towards the end of my PT sessions, the pain increased - a lot. I told the PT “It hurts. Are you sure I should keep going?” The PT said, “It’s normal, keep going, push harder.” This conversation was repeated several times. I eventually learned to adapt and live with the pain until I couldn’t any longer.
MRI showed my rotator cuff was still torn and never healed completely. I was finally validated but it came at a cost. Cue a 2nd surgery, 12 weeks immobilization, and completely off of work, followed by being laid off when I returned to my job of 22+ years.
Last week, I finally recognized and acknowledged that I have been traumatized by this experience and have avoided all PTs since that experience. PT after fusion surgery? No, thanks. PT to help strengthen my arm/shoulder after Parsonage-Turner Syndrome? I’m good. I’ll do it on my own.
Not being listened to...having our concerns being discounted or dismissed...not being trusted...not being respected or treated respectfully...being physically or emotionally harmed by our care providers.
Medical trauma is real...it needs to be acknowledged and talked about. The cost of it needs to be looked at in the short term but also the long term when we avoid getting the care that we need because we have been traumatized by past experiences.
If only doctors, therapists, and other medical providers knew how much pain and suffering they caused...the physical and emotional effects of medical trauma on rare disease patients perhaps they would change what they say and how they do things.
It shouldn’t be this way… and the only way it is going to change is if we can openly talk about it and start working to change the system. Are you with me?
Have you experienced medical trauma? Have you found ways to heal from it and to help avoid it? Please share your story in the comments so we can start learning more about how and what needs to change.