Hallway of a maternity ward in a Los Angeles, California hospital.

We Need to Talk About PTSD in NICU Parents

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Nothing can really prepare you for parenthood, but when a baby is born premature the excitement and anticipation of a new arrival is dramatically interrupted. Shocked and numb, you find yourself in the neonatal intensive care unit (NICU) with little or no warning.

Neonatal intensive care — a scary sounding place and one you are unlikely to chance upon. For eight weeks I visited my baby every day, trying to become a mother in the most medical of environments. Incubators housed tiny babies at the very edge of life, and all around me monitors beeped and alarmed as they seamlessly chimed with the uncertainty of our journey.

Given the nature of NICU, the pain of leaving your fragile baby each day, the feelings of emptiness and grief, the uncertainty and ups and downs, the lines, wires, monitors and alarms, not to mention the security buzzers at the entrance of the unit or the constant rigorous hand-washing, it came as no surprise to me that parents who have experienced premature birth are at greater risk of postnatal depression, anxiety and post-traumatic stress disorder (PTSD).

I remember the moment I first felt panicked and sick with PTSD symptoms; I was returning to the neonatal unit for my baby’s four-week follow up. Walking out of the car park and into the hospital I could feel my heart pounding in my chest and hear the beats and flow of blood throbbing in my head. I was dizzy as the sounds and feelings morphed into the beep, beep, beep of monitors and the hum of the ventilator as air filled my son’s lungs. I closed my eyes to block out the panic, but all I could see were wires and the mechanical rise and fall of my baby’s tiny chest. I felt sick to the bottom of my stomach, as if my entire body was shutting down and there was nothing I could do to stop it.

No one warns you about the flashbacks though. PTSD often presents itself once you are home. The support network of the hospital can disappear overnight and you are left to wonder how on earth you made it through. Family and friends with good intention assume the difficult times are behind you and the idea that discharge home would be the end of your neonatal journey suddenly seems farcical. The usual ways to access support were closed to me, with well-meaning questions at health visiting clinics or baby groups only intensifying negative feelings of anger, jealousy and grief. For me, the reality of becoming a mother in NICU was so far removed from the “norm” that I become isolated, unable to connect with local mums and the experiences of other families.

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For a long time I believed I was alone in my thoughts of loss, anger and grief. Fearful at want people might think of me I remained quiet about the flashbacks and struggled day-to-day with anxiety. I still remember the enormous wave of relief that engulfed me reading for the first time another mother’s account of life after neonatal care. It may have been the early hours of the morning reading her blog, but suddenly I wasn’t alone anymore and what’s more, I discovered I was in fact quite normal!

You see, more than 40 percent of NICU mums experience postnatal depression (compared to 5-10 percent of mothers who deliver at full-term without complication) and more than half report symptoms of anxiety and PTSD. Yet, like many aspects of mental health, PTSD following neonatal intensive care is rarely spoken about, and mums, just like me, hide away.

I guess that’s why I share my experiences now, why I shout about the two in five mums who experience mental health difficulties following premature birth to anyone who’ll listen! NICU may be a hidden world and the often-conflicting host of emotions difficult to understand, but only by speaking openly and honestly can we begin to raise awareness, offer hope and call for more support.

A version of this post first appeared on The Huffington Post UK.

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Thinkstock photo by JynMeyerDesign

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Why Living With PTSD Doesn't Make Me 'Strong'

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There’s plenty of negative stereotypes about people with post-traumatic stress disorder (PTSD); I often encounter the idea we’re all violent. On the seemingly positive side, I read narratives that describe people with PTSD as “strong”, suggesting we’re somehow superior for struggling with the aftermath of horrors. I don’t mean to criticize anyone who finds the word “strong” to be a helpful part of their self-concept. However, I think it can be problematic to throw around this word to describe people with PTSD (or any disability) without considering its implications. 

I dislike the word “strong” partly just because it’s a personal trigger. It reminds me of how those who abused me told me I wasn’t strong. It brings back being made fun as a child for my sensory sensitivities and difficulty with emotional regulation. I grew up believing I was weak because I lacked an even-keeled personality. 

I’ve come to accept my temperament as just one of the range of personality styles in the world, with advantages and disadvantages. But this isn’t the same as saying, “Actually, I’m not weak, I’m strong.” For describing my traits or behavior as “strong” suggests the alternative wouldn’t be strong, and I’m not comfortable implying that.

I could say I’m strong for showing up to my part-time jobs while struggling with paranoid thoughts. But is someone unable to work due to their psychiatric disability weak?

If I’m strong for living so-called “independently” in an apartment — also a misnomer, since we’re all interdependent — is a person who lives in a hospital or residential facility long-term weak? 

If I’m strong for living with PTSD, is someone who dies by suicide weak? For these are my options; I can’t just decide not to have PTSD anymore. 

You get the idea: my problems with the paradigm of being “strong” are a) it implies a judgment of other people and b) it ignores the fact that PTSD isn’t a choice.

I didn’t decide to be born into an abusive situation, and therefore having PTSD now is neither a positive nor a negative statement about my character. I’m neither strong nor weak; I’m just a person trying to act with integrity and simultaneously struggling with a mind and nervous system damaged by violence. I can respect myself for this without needing to compare myself to others.

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How I Channel the Poisonous Fury of My Past

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I used to be angry. I used to be filled with rage and hatred. I couldn’t stop the memories, the thoughts flooding my brain – anger over past hurts. Over being stuck with the ramifications of PTSD, bipolar disorder, isolation, fear, self-loathing.

The anger in me spread. It filled every part of me — my steps when I walked, my fingers when I painted, my words when I tried to communicate.

Every part of me was filled with poisonous fury.

I’m not going to lie – I had every right to be angry, to feel justified in being furious with the past, with characters in my life who played a role in setting the stage to my un-wellness. One simple thing in my day would go wrong and it was an absolute disaster. And all the injustices of my past would come flooding back — abuse, rape, shame, hatred, cutting, alcohol, drugs, suicide attempt, hospital, suicide attempt, hospital, suicide attempt.

Silence. Silence. Silence.

I was so silent.

Until I erupted.

And what an eruption it was. Filled with vile, vitriolic hatred. With smashed objects and screaming and agonized heartbreak. I remember hanging up on my dear best friend in an alcohol induced haze, throwing my phone over the balcony, walking into the house and seeing my husband’s eyes as he looked at me, confusion and worry over his face. I remember sinking to my knees, a scream bursting out of my lungs. I screamed and screamed. The emotions were too much.

I can’t I can’t I can’tIcanticanticantnononono….

Only this wasn’t just a one-time thing. It happened again, and again, and again. And it was exhausting. The pain, I can’t even describe how much my body hurt from three decades of pain. Pain piled upon pain.

It was shit. Just unholy hell.

I look out my window today. I think about that anger. The rage, the misery. I felt ashamed for so many years. I still do a little bit. I have aches and losses that I will probably feel for the rest of my life. But when I started writing about my shame, somehow, slowly, a fog lifted. I created a blog and wrote the words I’d be hiding from the world. I wrote about abuse, rape, self-harm. I wrote about mental illness. I wrote about how my 20s were a black void, hazy to me now. It’s still hard to look back on my younger years. But I wrote it. I put it out there and with every click of the “Publish Now” button, I felt as though I’d stripped down naked, exposing everything that was me for the whole world to see.

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So why did I do it? Why did I share my story? 

Why do I continue to write?

My first true public unveiling, a colleague came up to me, tears in her eyes. She told me how she’d suffered. And she wrapped her arms around me and said thank you.

My second, a stranger commented with “I needed to hear this”.

My third, a man from half-way around the world told me he had extreme depression and felt he had nowhere else to turn.

Each time I write, the pain lessens. I learn to accept myself, just a little. I see the flashbacks and I meet them as an equal. Depression, anxiety, hypomania are my old friends – I greet them instead of fighting them. I ask them what they need. Like ghosts, they just need to be heard.

My mother once said, “Pain is like a grain of sand against your skin. It rubs and irritates. It makes your skin raw. But you can never be rid of it. So, you just hold it there, letting it rub against you. You hold it for years, and it grows to be a part of you and you even forget that it is there. Until one day, you look at that grain of sand only to discover that through the years of letting it rub against you, it has become a pearl.”

My mother and I no longer speak, and that too is OK. I have my memories. Painful and good and I will hold onto those.

Each lesson is about learning to live with pain in your life. You can fight it or you can let it sit with you – be OK with the past. Be OK with the memories. Be OK with the hurts. Be OK with the ensuing mental illness – PTSD, depression, anxiety, bipolar disorder, should these come to pay you a visit.

Be OK with it all and one day, you’ll find yourself surrounded by pearls.

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Thinkstock photo via AnkiHoglund

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The Unexpected Side Effects of Childbirth With PTSD

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What seems like just yesterday I gave birth to a beautiful baby boy. He was a gorgeous baby, perfect in every way. My husband and I had wanted to start a family as soon as we’d been married but had waited five years, so we were so excited to be finally pregnant and could not wait to meet our baby. This should have been the best time of our lives, the realization of our dream to have a child of our own was happening, but it was the beginning of a nightmare instead. Now, 10 years later I have a diagnosis of post-traumatic stress disorder (PTSD), but at the time I was unprepared for how this was going to affect me and my first steps into parenthood.

The labor I’d hoped and planned for was a natural, drug-free delivery with my midwife and husband for support. As a young woman who had experienced a lot of trauma in the past and was incredibly shy about my body, I knew my limits and that this gentle and private approach was going to be an important part of the journey into parenthood for me. We had meticulously prepared and written a detailed birth plan and discussed the specifics with our midwives who were happy to assist us to have the birth I was hoping for. However, as most best laid plans go, especially birth plans, it was not to be.

Forty-six hours of labour, revolving door of midwives and doctors as their shifts started and finished, being moved from a birthing suite to a stark and frighteningly clinical delivery room, an unwanted epidural that scared me deeply, obstetric support, and then a frantic rush to the operating room. There I found myself surrounded by a room filled with doctors, nurses, and other medical and surgical staff. I was terrified and felt powerless. In the time it took to get the spinal block working, my baby had moved and surgery was no longer an option. What followed left me so physically and emotionally beaten up that I can still hear the doctor yelling instructions at my midwife and others when I close my eyes and still remember the gasp of horror when the physio visited me a couple of days later.

I really want to say here though that this experience wasn’t the doctors’, or the nurses’, or the other medical staff’s fault; they were amazing, kind, lovely people who were doing the best they could to get us both through the delivery safe and sound. They also were not aware I was a trauma victim. I doubt their treatment could have been different even if they had been — emergencies are rarely focused on protecting a person’s dignity but on preserving life. But the loss of power and autonomy triggered me badly and catapulted me into the depths of darkness which I spent the years following this trying to drag myself out of.

When my beautiful, safe, healthy baby was placed to my breast, instead of a surge of love, I felt overwhelmed with horror and sickness. I could barely handle the touch of his tiny hand against my skin. In hindsight I know I was in shock. I remember I couldn’t stop shaking, and even though I’d not ended up having a C-section I spent what seemed like forever in recovery, with warm blankets being put over me and being checked on by kindly nurses. My head was spinning and I couldn’t breathe properly. That time became a blur, but I remember my darling husband sitting at my side, holding our baby, looking shocked and relieved.

My darling little boy cried all the time; he probably had a headache from his eventful journey into the world. I struggled with healing, my milk supply, and breastfeeding was just another horror to add to my quickly declining mental health. Every time I tried to feed our son I wanted to be ill from the feelings of revulsion it brought up inside me. This in turn spiked deep feelings of shame and guilt. I constantly questioned and berated myself. Aren’t all mum’s meant to love the bond of feeding and nurturing their newborn child? What was wrong with me? After all my dream was to have a baby. Why was I not blissfully happy?

My dear husband was left to hold us all together. And he tried, he tried so incredibly hard, to do everything and be everything to the both of us. He changed nappies, liaised with the nurses and the doctors, took notes from the physiotherapist and the lactation consultants, and spent hours each night walking up and down the halls rocking our infant son so I could sleep. Almost 11 years on, he leaves the room when a birth scene comes on the TV; that time in our lives affected him too as he watched on, powerless to help.

We checked out of hospital on day five, much to the surprise and disapproval of our lovely midwives. I had hoped to feel better when we went home, but instead it just got worse and worse.

Once my husband had to return back to work, things truly fell apart. When he left for work each day I would cry and question how I could get through the next few hours without him. When our tiny son went for a nap, I would sit alone on the kitchen floor or the bottom of the shower and cry and pray, and cry and pray some more. I prayed for the courage to hold on because having experienced the pain of losing someone you love to suicide, I knew as desperate as I was to leave this all behind, the pain would only just be starting for my husband, for my son, for the rest of my family. I also prayed for death, for me to close my eyes and just cease to exist.

One day I heard a story on the news about another mum who lived nearby who had postnatal depression (PND) and had taken her life. It was a tragic story, but I related to it. I slowly cut myself off from family and friends. I was so exhausted that I didn’t have the energy or desire to be with people but mostly because catching up for coffee meant I would need to leave the house, and I did not feel safe to drive. I imagined driving into a tree or rock wall every time I got into the car alone.

Through all this, all these dark and desperate thoughts and weeks, not once was my child in danger of anything except a mother who was living in some kind of nightmarish haze. He was fed; I had needed to stop breastfeeding but instead expressed all his food for six whole months. He was cared for, I read books, and sang him songs, danced with him, took him for walks, and took him to playgroup. It was the moment he went into his cot that I could let myself feel all the pain, let myself wallow in its darkness. People who are depressed are not automatically selfish or bad parents who neglect their babies.

Others I knew were experiencing depression too, women I’d met over the previous months. They reached out and told others they weren’t coping, they got support, family and friends rallied around them, some went to hospital for short stays to help them get rest and cope with their illness, to recover for themselves and their families. No one noticed me falling apart.

I’d managed so carefully to hide my illness from everyone, even my husband, my family, our friends. People kept complimenting me on being so well put together! Friends and strangers told me I was a great mum, so relaxed and had everything figured out. Inside my brain was a voice that screamed, “Seriously? Can’t you figure out anything, why can’t you see? I need you to help me!” I was desperate for someone to ask me if I was OK, really ask, force me to tell them the truth, but all I could bring myself to do was force a bright smile and thank them, terrified they would see through the illusion.

It was six months on before I finally admitted I could not cope, and let down my guard enough to tell my husband I was not “just tired.” And he took me to our doctor. It took a long time to get over the worst of the depression, and the mental scars from that time will last forever. My postnatal depression was the super-sized version of the underlying depression and trauma I’d been carrying around for years, and that still remains. But I am thankful I get to live to tell the story. My children still have their mother.

Please ask those you love if they are OK. Really ask them, look in their eyes and ask them. That way they will know you really mean it. You may need to ask multiple times, but thankfully these words don’t cost by the letter.

Ask someone who seems fine…
Ask someone who looks “put together”…
Ask someone who appears they have everything going for them…

Sometimes those who seem to be doing great are just the best at putting on a mask, scared to show the cracks or feeling unworthy of the help they so desperately need. That was the case for me. I know it has been the same for others.

If you are struggling through the fog of depression, remember each of us has something to give to this world, each of us is valuable, that includes you. You can get through this, you can start to heal from PTSD and/or PND. It takes time and courage, but if I can do this, you could do it too! Please don’t wait for someone to ask. Reach out.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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Explaining My Post-Traumatic Stress Disorder in Poetry

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Editor’s Note: If you’ve experienced sexual abuse or assault, the following post could be potentially triggering. You can contact the National Sexual Assault Telephone Hotline at 1-800-656-4673.

My brain is a broken time machine

It is storytelling in the wind
Pages blown back and forth Chapter 8 giving way to Chapter 3
Familiar scenes that refuse to stay
On the left side of the bookmark

My brain is an archeologist

It is fossils learning to breathe
And ancient, buried memories
Breaking through the crust of the earth
It is a sticky rewind button
And an escalator changing direction at whim

My brain is a museum curator

It is “no” behind finger-smudged glass
And memories secured in
Elegant, golden frames
Those nights sealed in paint on canvas
Never to fade, never to fade

My brain is a rogue tour guide

It is monuments built over bruised skin
It is tears on Holy Ground
It is historic preservation and a gift shop
Cave paintings I keep going back to
Like spontaneous pilgrimage
Shrine to words I never said

And although
The forest fire raged over me years ago
The burn of his touch long gone
I am still sifting through the ashes
Still following the scent of burning wood

If you or a loved one is affected by sexual abuse or assault and need help, call the National Sexual Assault Telephone Hotline at 1-800-656-4673 to be connected with a trained staff member from a sexual assault service provider in your area.

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I Was Diagnosed With PTSD at 14, but There Was No Place for Me

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I was diagnosed with post-traumatic stress disorder (PTSD) at 14. But there was no place for me. I was given medications that worked for adults with PTSD. They worked, but no one talked to me about how being diagnosed as a child would affect me. Because there was no place for me. Doctors wrote notes in charts but didn’t explain them to me.

There was no one to talk to who’d been through it. No one to show me the ropes. Because there was no place for me. Nobody was familiar with childhood PTSD. Children with my disorder typically don’t get diagnosed until adulthood.

There was no support group for kids like me. So I taught myself the tricks of the trade. I constantly looked up things about PTSD and how to manage it. Since I didn’t know anyone who’d fought this disorder I cobbled together all the coping mechanisms I could find. I didn’t care where they came from, only that they worked.

The scariest part though was knowing I wasn’t alone. I was trudging along trying to survive feeling like a sole survivor of an apocalyptic world, but I wasn’t. I knew the statistics about foster kids and the fact that we experience PTSD at high rates.

So how was it that we existed in that kind of numbers and yet never saw each other, never interacted? Never managed to pass on information desperately needed for survival? I don’t know. What I do know is growing up, there was no place where I could talk to people, let alone someone my own age, with PTSD about PTSD.

As an adult I have found places that fill this need, but I don’t need them nearly as much as I did then. So I’d like to ask. Is there a place now for children and adolescents with PTSD to talk to each other about what it’s like? If not, can we make one? So future kids aren’t struggling alone, wondering if there are in fact others out there.

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