The lights almost blind me, magnified by the blur of tears pooling in my eyes. The nurses on either side of me look terrified as they wheel my gurney down the hall. They attempt to treat the situation strategically, methodically, ordering tests and injections and guessing at the most likely cause for what is happening. I echo their panic, but not in the same way. I’ve been here before. I know it’s scary and confusing, but I know what to do. They do not. But I can’t tell them… my body won’t cooperate, my mouth won’t open, my voice doesn’t work. In my mind, I’m screaming at them, only they can’t hear me and all I can do is lay there and await the worst.
I’ve had this nightmare a hundred times and every time it jolts me awake, sweating and gasping for air. Some nights my husband has to wake me because I’m not breathing and I’m convulsing and making strange noises. And every time it’s just as frightening as the last. Except that it isn’t just a nightmare, it’s a replay of events I’ve been through and conjectures of what may happen again in the future. It’s so scary when I’m in the dream because I know exactly what that feels like, what that whole experience is like, it’s so real because it has been real.
This is just one aspect of living with PTSD is like for me.
Last year I had enough. I sought out a psychiatrist and got a diagnosis. After a year of dealing with this cloud hanging over my head, I already knew what it was, but hearing that label attached to it should have given me some relief, some peace of mind… it didn’t. It just put a name to the ugly face that I look at nearly every day. It didn’t eliminate the nightmares, it didn’t erase the anxiety, it didn’t stop my fears from being realized, it didn’t fix anything. Only I can do that and it’s so much harder than I realized. I thought that if I wanted it bad enough, I could stand up to the stressors and face my fears, to overcome them — but that wasn’t the case, it’s not that easy. It’s something I have to work on every single day.
My experiences with medical professionals has caused this. Being a female with invisible illness and complicated diagnoses has made getting help difficult and sometimes impossible. For more than a decade I have heard too many times, “We don’t know what’s wrong with you”, “sorry, can’t help you” ,”It’s probably just anxiety”, “There’s nothing on the imaging, so it doesn’t exist”. I’ve had my emotions toyed with, my symptoms downplayed, my input dismissed, my health ignored. I’ve been lied to, mistreated, misdiagnosed, hurt, and almost killed by medical staff who chose not to listen or do their due diligence to help me. This has lead me to distrust all medical professionals. I already had trouble trusting people, but when it comes to doctors and nurses, you’re supposed to trust them implicitly. Your life is literally in their hands and yet they seem not to care most of the time. Especially as a female because I am perceived as overdramatic, hysterical, emotional, with a low pain tolerance and simple mind. Of course none of those things are true, but that is how they see me from the moment I walk through the door. This is lessened when I’m dealing with female doctors, but not entirely eliminated. Most of the time, I know more about my disorder and it’s intricacies than even the specialists and that makes them dismiss and mistreat me even more. I dread seeing any doctor, nurse, therapist, surgeon, etc. because I worry that they won’t listen to me, that they will lie to me, that they will hurt me. They have so many times before. Even when I’m seeing someone for the umpteenth time, I still get anxious. That little voice in the back of mind is always there warning me to prepare for the worst. And even when I get validated, when someone actually listens and help and does their job, it doesn’t stop me from feeling that exact same way the next time I see them again. I’m so paranoid that I get all my own reports and do all of my own research and be an advocate for my own health. I do my best to make sure the staff has everything they need to make sure a procedure goes right and that I have people who understand my disorder and know my extensive allergy list. It doesn’t keep the stress at bay. I’m always wondering if they actually care, if actually heard me, if I’ll actually survive.
There’s this continual thought echoing in my head that I will die before they figure out what’s wrong with me. Some people (especially doctors and nurses) see this as being dramatic. Nothing’s going to happen to you, you’re fine. However, this is a totally legitimate fear that has been reinforced over and over again. I’ve almost died a few times, I’ve been misdiagnosed, I’ve been ignored, and every time it was their fault, not mine. I showed up, I tried to tell them, I showed them proof and have never cried wolf. Yet, time after time, they treat me as if none of that is the truth, that none of it has happened. And this is why I’m afraid.
That nightmare isn’t just reality being replayed in my head. It’s a euphemism for the fact that I’m not heard. Think about that.
I don’t know when or if this will ever go away. Only time will tell. However, I wanted to share with you a vulnerable side of me, a truth that exists, even if under the surface. Maybe you know how this feels or maybe you just now realize what I go through, but regardless, I’m glad to put this out into the open.
Try to stay strong… I will, too.
Far From Perfect 