I feel like people think I am exaggerating when I say I have post traumatic stress disorder from our NICU experience. Who me, exaggerate? OK, yeah, I do sometimes. But when I say PTSD, that is what I mean. You may recall a few years back that a study came out about parents of kids who had been in the NICU, and a decent number of those parents showed signs of PTSD months after their kid had come home from the hospital. When I read an article about the study that described their symptoms, I thought, “Yep, that’s me. And The Hubs.” It felt good, and awful, to know we weren’t alone in feeling the way we did, and it felt good to read doctors saying “This is a real thing.”
I have had waaaaaay too many people say uneducated things to me about my PTSD that sound soothing but actually aren’t. These are good-hearted people who just want to be supportive, but don’t know what they’re talking about, so they are actually being the opposite of supportive. Things like “It’ll get easier, someday this will all be behind you” and “Just try to forget it and get over it.” No offense, kind hearted people, but that’s just totally not helpful. Let me explain why.
See, PTSD is a mental illness. Mental illnesses don’t respond to logic. You can’t reason away a mental illness. It’s an illness. Like, you can’t just say to a person with cancer, “Hey, stop having that cancer, cancer is a stupid thing to have, get rid of it.” And then the cancer patient is like “Golly, is cancer bad? I had no idea! I will stop having the cancer now.” And boom they’re cured. Wouldn’t that be an awesome world to live in? Yes, it would. Alas, that is not the world we live in. We live in a world where there are a LOT of illnesses without cures. And PTSD is one of them, and telling people to just stop having it and get over it? Yeah, that’s pointless, and frankly, hurtful. Because it presumes mental illness is a choice, and that mentally ill people are stupid enough to choose to have one. When you tell me to just get over my trauma and forget it, you are calling me stupid. I know you don’t mean to call me stupid, so please, stop it.
The Hubs and I went to a therapist together for a year to help us cope with our PTSD. She described trauma, which is what the NICU experience is, basically thusly: a trauma is like a sharp, pointy, scratchy rock that you carry around with you, and no matter how much you want to get rid of the rock, you can’t. It’s superglued onto your soul, and it’s not coming off. You’re stuck with the rock. The best you can do is polish down the sharp pointy edges to make the rock stop cutting you up all the damn time. That’s what therapy does.
I like to think of trauma rocks like this: we all have a box in our brain that contains our stress. It is only so big, and when too much stress builds up in there, it overflows, and then bad shit happens, like panic attacks and yelling at your kids and midlife crises involving Porsches and sexting. For most people, their box is big enough to hold their stresses most of the time, but for people with a trauma, that trauma rock is sitting right in their stress box taking up a ton of room. So there just isn’t as much room in there anymore for regular stresses like the dishes piling up in the sink and your boss being a dick and would you kids please stop hitting each other and the next thing you know, bad shit is happening, like you are sobbing uncontrollably in a corner. And remember, as much as you want to throw that rock out and make more room for regular stress, you can’t, it’s superglued in there.
So, you have to learn to let some of the regular life stresses go instead. You have to learn to pick and choose what regular stresses you will hold onto and which you just can’t anymore. Because you never know when you’re going to hit a trigger that makes your stress rock rattle around and slosh the other stresses out of the box and make a big sloppy emotional mess. Therapy helps with this too, because it helps you to let go of some of the other stresses. Our therapy sessions were like a storage locker for those stresses that weren’t superglued in like the trauma rock is. We could take stresses out of the box, look them over, and then leave them in the storage locker at therapy, and not carry them around in our stress boxes anymore.
I have a few triggers that set my rock in motion. The Girl throwing up. Someone making me feel like I don’t have a say over what happens to my kids, or making me feel like they think I am a bad parent. Hearing about someone else’s birth trauma. That Star Trek movie where Captain Kirk is born in a traumatic situation? Downtown Abbey when Sybil gives birth? These are things that can turn me into a sobbing panicked mess. I am literally feeling all the awful feelings from the NICU time, and it’s really more than my brain can handle. They seem like minor things and not big enough to cause a panic attack, unless you have a sharp rock superglued on your soul that is cutting you up and sloshing around all your other stresses.
Dealing with the world when you have NICU PTSD can be hard. It’s hard to explain to friends why you can’t be at their party that you’ve been planning to go to for weeks, because you are recovering from a panic attack. Or to explain to your boss why you really aren’t up for that meeting right now. It’s hard to talk to your kids about why you are crying. And it can be really, really frustrating to feel like you’re constantly having to explain yourself to people. I think that’s partly why connecting with other NICU families has been so great for us. We don’t have to explain the trauma to each other.
Still, in the end, I have found it easiest to just tell my non-preemie friends what is going on. When you explain that your mental illness is acting up and you need a break, your friends are surprisingly sympathetic. At least, mine are. It’s trickier with a boss, but if you have a good one, they can be very understanding too. Most people are good people, and they want to be helpful. And they are, if you tell them how to be. Which is why I am writing this post. Because, I know people WANT to be helpful to their preemie parent friends, but they just don’t always know how, and it’s really easy to put your foot in it…unless you know how trauma works. And now you do!
10 thoughts on “Trauma Rocks”
Hope everyone gets to read this, Beth. You’ve given a lot of people permission to not feel guilty when going through similar circumstances.
As someone who has survived cancer (so I can say this), I always say I’d rather have cancer (my kind, not my mother’s kind) or a broken leg than a mental illness. And God Bless our Soldiers who are going through their own hell too!
When you were going through this, your daily updates were so positive and full of hope. I remember thinking that this gal is either the most optimistic person on the planet or she is telling herself things are great because if she doesn’t, she’ll fall apart; in other words, in denial. When did the PTSD hit? Once you survived the boy’s first year and you allowed yourself to think about the last 18 months and look forward to a normal future? No one should have to go through what you went through. I imagine you’ll revisit this era when you are expecting your first grandchild. Just know that you helped a lot of people, especially the girl (I’m thinking about everything you did before getting pregnant and then the 9 months of torture you went through to give birth to a 6 month old 😉 !
Insightful not just for NICU PTSD sufferers, but all PTSD sufferers. Gave me a big heads up to understanding this type of illness.
I think I could start every comment I leave with “100 million, billion times, YES! THIS!!!!!” You nail these posts, Beth.
You’ve done an outstanding job here explaining this in a way that people who don’t have NICU PTSD can feel you without feeling like there’s any judgment. You share your experience in a way that makes people want to understand what you’ve been through.
I’ve felt very frustrated trying to help people understand PTSD. It’s such a slap in the face to hear things like “just don’t think about it” or “you’ve just got to remember you have a lot to be thankful for.” Not helpful. NOT helpful.
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Right?!?! SO NOT HELPFUL. You don’t just get over trauma. You get over them being out of donuts at Starbucks, or your favorite TV show being canceled. Trauma isn’t the same as disappointment. Also? Most people I know with NICU PTSD are pretty darn thankful for what they have. Being thankful doesn’t make trauma go away!
I’m going to hug the pee out of you when I see you in June. 🙂
Hi Beth~ Thank you for spelling out NICU trauma. I didn’t know that’s what it was when I had it 16 years ago. And it never came up in the talk- and pill therapy I’ve had since then. But now, when I see a mom with an obvious (to me) preemie or a baby wearing a helmet, I can give off a sympathetic vibe to her. I rarely say anything but I can see the stress behind her eyes. And though my daughter rarely gets sick now, there a few scary trips to ER when she used to have headaches. The last time we went to a neurosurgeon for a check-up, he said if her shunt fails we have three days left. So now I live my life waiting for the other shoe to drop. I function with the help of 2 different kinds of meds that I will take the rest of my life. My husband is the strong, silent type with a silly sense of humor. He was the one who put Monty Python DVDs on for me as I lay on the couch in catatonia. It worked and I strode into the NICU for 40 days with at least a facade of confidence.
I’m with ya. sister. Rock on through it (and sing the “Lumberjack” song).
Right back at you, Susan! Man, waiting for the other shoe to drop, that is the story of our lives when we’ve had a trauma, isn’t it? Even when things are going well it feels like that, but when things don’t go well, it’s even worse.
Beth, you are so eloquent. You explained your feelings relating to being a NICU mom with PTSD in such an easy to understand way. You are brave for sharing this with us and as someone who suffered a different trauma that takes up room in my stress box I agree with exactly what you wrote about feeling overwhelmed at times when faced with additional stressors.
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You know, trauma is trauma. Our rocks may be different shapes or colors, but they’re all attached to us with the same superglue! Big hugs!
Seriously, I love you. As a person with regular mental illness as well as birth trauma, you wrote this at a perfect time…33.5 weeks along and freaking out about entering into a hospital because of what was done to Marsi and said to me.
Hang tough, Rachel! Although, I know just how hard it is to stay strong–I went round the bed in my post-preemie pregnancy both when I hit the point when my water broke (26 weeks 6 days) and when I hit 36 weeks. The stress was just really overwhelming and I ended up taking off work early instead of working up to my due date. Best decision I ever made–finding a way to dial down the stress was key.
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