Whether you are an EMT, a Doctor, or Nurse, or anyone else who tirelessly works to help in emergency medical situations, I don’t know how you do it. I have friends and family who work in some of the same capacities as you, and I hear their stories. I don’t know how it’s humanly possible to still be smiling and gentle and kind by the end of your shift. THANK YOU for all you do for us. I really respect how hard you work and understand you put up with an awful lot. You see every type of true emergency and then have your time wasted with non emergencies… You deal with everything imaginable, and then, someone like me comes in. I have a movement disorder.
A few years ago I suddenly started having severe symptoms. I had lived with my disorder for years, but never in my life did it take over my entire body or become so violent. I was scared for my unborn child, not knowing what my body flipping around and contorting was doing to my baby, or if the contractions it triggered would cause me to go into premature labor. I felt betrayed and trapped by my body. It was doing things I certainly didn’t want it to do, and it wasn’t letting me do what I wanted to do. I couldn’t even open my eyes or speak during these events. My dystonic spasms were more severe than I’d ever knew was possible, the pain completely off the charts. The twisting of my torso made it hard to catch my breath. It was absolutely terrifying for my family to watch, and they called for help, on on more than one occasion.
I had polar opposite experiences with how I was treated. Each time my symptoms were the same, my family told all the same information. What medications I was taking, and how I could still hear and feel but couldn’t speak or open my eyes.
One of my early experiences was with an EMT who was convinced I was faking. I was handled roughly, the straps on the stretcher pulled so tight they hurt. Once I was taken far enough away from my family’s watchful eyes and ears he started yelling in my face asking me why I didn’t open my eyes and why I “refused” to speak to him. All I wanted to do was get help, and this man was making me wish I could escape and run away…
The next time I was scared to go, but the first responders begged me to. This time the EMT who was in charge of my care was the kindest most compassionate person I could have ever hoped to have. He loosened some of the straps to give my body the room it needed to spasm and twist around. When my breathing started to get rapid due to fear and pain he would speak quietly and calmly to me reassuring me help was here and I was going to get through this. He treated me with dignity and like a normal human being who was needing help….
I will never forget either experience. I will forever be grateful to the kind EMT and all he did for me. But it is the bad experience that has always been in the forefront of my mind whenever I yet again begin having severe symptoms… Even when my pain is at an unimaginable all time high, or my breathing is so severely compromised that it is scaring everyone around me, I still refuse to go to the hospital. I’m not sure I would get help anyway… In my past experiences I wasn’t given anything to help, nothing to calm my muscle spasms, nothing for the pain, not even a sip of water. If I wasn’t just left to lay there suffering alone for hours, then I was carefully being observed for faking, or tested for drug abuse, or having a psychiatrists doing their best to get me to confess that I was abused or at least totally overwhelmed with life. I’m afraid to ask for emergency help. And I’ve since discovered I’m not the only one.
There are enough heart wrenching stories to fill a book of people with all different kinds of movement disorders who’s regular meds aren’t keeping severe symptoms at bay who go to the emergency room desperately hoping for help and then have very bad experiences. Being left to suffer alone, restrained, handled roughly, ignored, yelled at, being sent to the psyche ward and more are common themes. All we want is help. Relief from the unrelenting torture that a movement disorder can inflict on our bodies. I wish there was standard protocol in place, like there is for epileptic seizures, to make it easier on you to help us. But I do understand that there are innumerable variables when it comes to symptoms and situations surrounding those of us with movement disorders which makes it so much more difficult.
There are a lot of things we have in common though. We long to be treated with kindness. We hope to be spoken directly to, and like an intelligent human being. Just like with seizures, we need to be kept comfortable in as safe a place as possible so we don’t hurt ourselves. Restraints at the very least make it all the more painful for us, and often, it only serves to make our spasms and tics worse. Involuntary movement is just that, involuntary. Not only can we not stop it, we are frustrated our body is out of our control. Dystonic spasms tend to get worse if they are resisted, if someone tries to force our body in a different position the pain can be unbearable.
If our condition is beyond what you are able to help with, we would so much rather hear a compassionate “I don’t know how to make it better I wish I could” than “Get over it, you are capable of going home if you wanted to”. We are frustrated and embarrassed enough with what our body is doing, it makes it all the more humiliating to realize that we are thought to be faking, or somehow doing it to ourselves for some reason.
I assume if you have read this far you are someone who cares. So very many of you who work in emergency medicine are angels dressed in scrubs. I’m so very glad you put up with what you do for the opportunity to help people in need. More often than not, if you are seeing someone with a movement disorder you are likely seeing us at our most vulnerable, painful, exhausting, frustrating, and desperate moments. Every kind word you speak and every gentle touch goes a long long way, and I thank you for that from the bottom of my heart!