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!