This post may be triggering for those of you who grew up in hospitals like I did.
The phrases in quotes are directly from my childhood medical records.
My diagnosis is actually C-PTSD, which is a more complex version of PTSD, but for this post I have just used the term PTSD to explain things.
I was born with Spina Bifida. My mom, her doctors etc didn’t know I was disabled until I was born. She did not have any ultrasounds during her pregnancy because she was poor and the local free hospital only did ultrasounds if something appeared to be wrong with the pregnancy, hers was perfect. Within an hour of my birth I was being put on a helicopter, without either of my parents, and flown to another city for medical care.
My mom would not see me for three days. During that time I was given no affection, bonding or any other kind of attention from humans. I laid in an incubator alone, connected to tubes.
At three days old I had my first surgery. By the time I went home three weeks later I’d had a surgery every week and my parents had spent so little time with me I hadn’t been named.
Before I was taken from my mom immediately after my birth she didn’t know what was happening. All the doctor told her was that I was a “spinal baby” and where to find me once she was released from the hospital herself. This was 1985 and Louisiana. The doctor was young and clearly overwhelmed. A trend that would continue for my entire life.
It wasn’t until my mom met with the neurosurgeon who was taking care of me at Children’s that she was informed anything about my disability. Even then, she was given the worst case scenarios, about a child she’d barely met, and asked if she wanted to keep me or give me up for adoption. They wanted an answer on the spot an she didn’t hesitate, I was her daughter and she was keeping me.
The next 11 years of my life were nothing but surgeries and hospital stays. I had 18 operations by the time of my 11th birthday. Looking back now most of them were completely unnecessary and their only real purpose was painful memories for me.
By the time I was six I was labeled a difficult kid in the hospital. I learned how to pop out the IVs in my hand, reprogram IV machines and would “throw a fit” if a needle so much entered my room while I was awake.
The doctors and nurses learned to just sedate me before anything had to be done to me. They’d bring me this purple liquid to drink, it was tasty and I’d be totally asleep within a few minutes. Even now I cannot drink grape flavored medicine without panicking. It was easier that way I guess. All these did to me was ingrain fear, resentment and a whole lot of shame.
It got to the point by then that my mom had to pull me out of the doctors and clinics I was in. As I got older my “temper” got worse and I was getting “harder to control”. The harder to control comment was made after I threw the purple liquid at the nurse and told her I was not going back to sleep. Now you might be thinking they sedated me in an effort to make things easier on me but I can honestly say that no, they sedated because they didn’t want to deal with me and the sedation just made my fears worse. I feared sleep for years and sometimes still do. I never sleep deeply and I wake up at the slightest sounds, always wide awake and ready for someone to be coming at me with a needle.
During those 11 years I nearly died 8 times. I spent 7 hours in a coma, when my mom found me I was turning blue. I woke up during a surgery to hear my doctor discussing my “maturing” body with another doctor. I spent 3 weeks in an infectious disease department living under a tent because they couldn’t diagnose a kidney infection.
My mother documented every panic attack, every cry, everything. I have dozens of pictures of myself in the hospital, red faced, bawling, begging to be left alone. She displayed these in our living room the way most parents display pictures of their growing children.
Outside of the hospital people always talked about how strong I was. They called me brave, a warrior, a fighter etc. I was just trying to survive.
For three years I didn’t have a single surgery or hospital stay. I calmed down a lot.
When I was 14 my mom heard about this brand new “amazing” surgery that she knew I just had to have.
I panicked. I begged not to go back to the hospital and be put through that again. My mom called my old doctor and they did it anyway.
I screamed from the moment we got there. My mom’s response? “Sedate her.” As soon as I woke up from surgery the crying and screaming continued.
I spent the first thirteen days after that surgery unable to hold down food. My school was calling my mom every day demanding to know when I would be back because I was only supposed to be in the hospital for 3 days afterwards and I was there two weeks. I lost 30lbs. I could have died. My doctor was giving me the same anti nausea meds that cancer patients get, they weren’t helping. My mom ate my food for me for two days because I told her if I was going to die I wanted to die at home, not in the hospital. So we lied to all the nurses and doctors and they sent me home. As soon as we left the building my nausea vanished. I ate McDonald’s on the way home.
The surgery backfired. It was very painful, it never worked right.
At 16, I was tied down with two straps across each arm and leg because I was crying and hyperventilating when a nurse could not get a vein for a kidney procedure. A test that should have taken no more than an hour took twelve. What was I screaming? “Use a butterfly! Please get a pediatric nurse! You’re hurting me!” The nurse’s response? “Shut up and quit moving.” The thing about PTSD is sometimes you remember nothing, but when you do remember, you remember every detail with excruciating accuracy.
My mother was escorted out of the hospital for telling them to leave me alone. By this point she had finally learned that the doctors were not gods and was defending me. She was kicked out of the hospital for it. I was a minor. We could have sued, but we didn’t because I just wanted to go home. I didn’t leave my room for a week and when I finally did my doctor asked what had happened to me. I had bruises covering every inch of my arms and legs. I have Spina Bifida, I cannot move my legs. There was no reason for my legs to be bruised like that. Hell, I was a child, there was no reason for ANY bruises but I digress.
I was 30 years old before I understood why I had behaved that way as a child.
I have medical PTSD. The therapist that diagnosed me thinks that I developed it before I was a year old and it was ignored, which led to me being labeled a difficult child. She actually cried with me when we talked in depth about everything I’ve been through.
I’m writing this now because I still see this behavior in parents and in doctors in 2019 and it pisses me off to no end. If your child is screaming bloody murder every time they enter a hospital and they’ve had multiple bad experiences there that’s not “a little anxiety,” or a kid having a tantrum that’s PTSD and the longer you wait to get them help the worse it will get. Believe me, I lived that life and it is hell. It’s something that even after years of therapy I’m still learning to cope with. But worse than the symptoms is the shame that was so deeply ingrained in me because I trusted the adults around me. I trusted their judgments and so if they said I was just being difficult and needed to just get over it I tried. I tried SO hard and I couldn’t. I tried SO hard to just be a good, compliant kid and it was absolutely impossible for me. I carried that shame for a very long time, but now I understand that I wasn’t a bad kid. I was a terrified, traumatized kid that was put into situations that I never should have been put into. And I hope that if any parents are reading this right now and you’re seeing your kid in what I’ve written that something clicks for you. Because if I can only do one thing in my life it will be to make sure that even just one kid is spared the shame and the humiliation of being labeled something they are not.
But now as an adult there’s something else we need to talk about in the medical world. When I enter a medical procedure now, as an adult, and I say, “I have medical PTSD, I need you to be patient with me.” (Which are words I have beaten into my brain to say in times of panic, because I can not think straight at that point and want to start out being informative and nice.) Almost every single nurse I have encountered rolls their eyes and says, “everyone gets anxious with needles hun,” and that is SO dehumanizing. When I say I have “medical PTSD” I literally mean the moment you bring that needle into this room I will not be able to breathe and I need you to be prepared for that. I have gotten to the point now where if a nurse makes a snide comment I make one back. It may not be the best way to handle things, but nurses should know how to treat people.
The very few nurses I’ve had that have taken me seriously have been a godsend. I think a lot of that attitude comes from people making jokes about what PTSD really is and/or not understanding what it actually feels like. I have anxiety and I have PTSD and I can tell you, if you think your heart racing a little and getting a little sweaty over something is what PTSD feels like you’re wrong.
***Describing what PTSD feels like below, may be triggering for some people (placeholder also appears at end of description)***
When I have to face one of my PTSD triggers, first my heart starts to race, then I start sweating, then I start shaking and stuttering. After that I can’t breathe. Then my surroundings disappear and I can not remember my own name, where I am or anything. If I can not control it I may start vomiting or have diarrhea. My brain stops making memories somewhere around this point. If I’m lucky I dissociate and go into a sort of autopilot where I feel nothing, remember nothing and experience nothing. I’m physically there, but completely numb.
After years of therapy I have tools now I can use to keep myself in the present, but they are not 100% effective. I usually spend the next several days slowly coming back to normal.
I think if I had gotten diagnosed and proper treatment as a child as well as had doctors and nurses who understood what was happening to me I wouldn’t have struggled as much as I did for as a long as I did. Instilling that sense of shame in me made it almost impossible for me to reach out for help even after the events were over. Now when I think about it any of my childhood memories just make me feel like I was a used lab rat.
Now I know a lot of parents are probably going to get angry with me saying this but it needs to be said, having a child with a disability does not make you a genius in everything related to that disability, especially your child’s experiences. You can have your OWN experiences with your child and your child’s disability, but those are yours, your child’s experiences are entirely different.
My mom was never in the hospital bed hooked up to IVs, she never went into surgery with me or experienced the pain I did afterwards. She never was stuck with needles or tubes. Sure she watched it happen to me and that was probably traumatic for her, but the experiences of it happening only happened to me. Only I know how I felt in those moments. So many parents of disabled kids think, ‘oh well I’ve been there every step of the way so I understand,” and I’m here to tell you YOU DO NOT. My mom may have very well feared for my life several times, but I’m the one who almost died. I’m the one who has PTSD and I’m the one who was left completely out of every medical decision ever made about me but was left with the physical and mental scars of every “oops” that happened. I’m the one who ended up in therapy because of what I went through. And those parents who use that voice to shut down the arguments of us actually disabled people who went through these experiences ought to be ashamed of themselves. We tell our stories to help your kids because we can give you an insight you can not get on your own, shutting us down and telling us you know better than us is disrespectful not only to us but to your children as well. If you really cared about what you’re putting your kid through you’d listen to those of us who have experienced it. On that same note, the parents who have reached out to us and who have listened have been an awesome experience for me. I love helping those parents understand what it really feels like to be a scared child in the hospital and have helped them learn to spot the difference between a panic attack and a temper tantrum. It’s an awesome feeling when you can help a child be soothed instead of having their trauma grow.
I see so many adults with different disabilities with stories just like mine and it breaks my heart. I also know of children that this is still happening to and ya’ll it’s gotta stop. Our children deserve better. Our children deserve our respect.