Social Stigma and Peer Support – a 100th #PNDhour guest post

This week is the 100th #PNDhour, a fantastic milestone for the weekly per support network for women experiencing postnatal depression and perinatal mental health problems. The Twitter chat takes place every Wednesday at 8-9pm. It is the brainchild of Rosey, a mum of 3 and PND survivor who can be found at @PNDandMe and pndandme.co.uk.

When I was in the depths of my mental health problems, I couldn’t even look at myself in the mirror. I’d close my eyes or turn to the side whenever I went past one, afraid to look at the mess I’d become. Broken body and unwashed hair and sad eyes;  I thought  maybe if I didn’t look at myself I could pretend it was happening to someone else.

One of my first outings with my baby, I was flustered and in a panic because my baby needed feeding in the library and was crying very loudly, and I didn’t know when to go. A lovely older librarian helped me out, and on the way out the door, she told me she thought I was doing great, and whispered that she didn’t get out of her nightie before 3pm with her first. It gets better, she told me.

When I was finally admitted to the mother and baby unit, it was in the hospital I work in. It was a couple of days before it sunk in just how close I was to my office, my colleagues, and my patients. I was granted escorted leave from the ward, but I didn’t want to go. I was terrified of being seen. 

One day my psychologist gave me a business card for a local peer support group. I went along with my baby, and it was just me at the group that day. But the the facilitator had also been in the same ward a few years ago, and I found myself saying “me too!” over and over again.

Months later, back at work, I was sat near some hospital staff laughing and joking with each other. “Ha ha yeah they got a place for people like you! Down on A floor! Never see you again mate!”  said one to his friend. That’s where the mental health wards are. Eyes stinging and cheeks burning, I just sat there. Heart pounding with anger. Impotent rage. Mouth stitched shut by social stigma, I didn’t say a word. Oh yeah it’s real laugh a minute stuff down there, wanting to kill yourself to end the mental torture, what a hoot. Being so terrified because you don’t know what day it is or whether you’re alive or dead, hilarious.

I found more and more people online who’d experienced similar things to me, and we supported each other and learned to heal. I discovered #PNDhour and the wonderful job it does supporting women with perinatal mental health problems. It gave me the confidence to be more open with mummy friends, and I started to hear that magical phrase more… me too… me too…
Later again, I’d started going back to an evening class to get some time out for myself. It was Halloween, we were all condemning the sale of ‘psycho’ costumes by supermarkets. Then the atmosphere changed. A few of our group lean in, and one by one started recounting all the ‘scary nutter’ stories they knew. The dad who was chased by a ‘mental patient’ who wants to play tag with him, the mad lady in her pyjamas asking for a cigarette. All the while laughing and saying how scared they’d be. I tried meekly to educate them; “you’d be surprised who’s been in hospital and you don’t know”,  but the conversation had already moved on, so I didn’t tell them. I felt like crying and hiding, but I couldn’t let my “us” mask slip to reveal I was really one of “them”.

I began to notice when friends were struggling after their babies were born, and got braver at sharing, and saying loudly this time ME TOO. I’d tell them to come join us, at the support group, on the Twitter chat, and share their stories.

Recently I was at a professional training event, where the child safeguarding person told us that children shouldn’t have to suffer the embarrassment of having mentally ill parents. I challenged her view, in front of a whole room full of colleagues. A friend of mine attended the training later and told me they’d changed the content to comply with equality laws and anti stigma campaigns. 

Eventually, I felt brave enough to tell my story to a group of trainee midwives, emboldened by peer support voices. Their feedback was wonderful and I’m confident they’ll consider perinatal mental health more now.

I sometimes think, If only I had a limp, a disfigurement, a crutch. Something that shows the lasting damage of my mental health problems, something people could see and notice and feel sorry for. They’d know to go gentle, speak differently around me. But instead, I’m seen as part of the “us” not the “them” of mental illness and I get the full force of their ignorance and stigma, raw and unfiltered. 

I now see it as my job to challenge stigma where I see it, and peer support like #PNDhour has been instrumental in giving me the confidence to do so. As a group, we have a louder voice and we help each other overcome the secrecy and shame and speak up for what’s right.

It starts with a whisper. “It gets better”, “Me too”, slowly building in volume, until the whispers become a roar. “Me too” becomes “us too” and now, we make people listen. 

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Just the basic facts, can you show me where it hurts 

I had a horrible labour. I had a horrible birth. I lost 3 litres of blood after days of back to back labour and a failed epidural. I believed I was going to die. I spent 5 days in hospital in total, and was discharged home with a bruised pelvis from the forceps, and a bucketload of medication. I started motherhood with a heavy dose of anxiety, exhaustion and confusion about what had happened.

At home my girl was instantly starving. She breastfed constantly, for hours at a time, including 8 hours straight that first night. I remembered the safe sleeping advice that said you should never fall asleep in a chair with a baby, and that bedsharing was dangerous, and I began to feel incredibly anxious about staying awake. I was terrified I would fall asleep and accidentally smother her. Yet it seemed imperitive that I continue. I willed the the sun to come up, and thought maybe if I could just make it through the night I’d  be alright. I cried; that seemed to be happening a lot lately.

The next few days were a haze. I tried to rest. I became obsessive about sleeping enough, though I was actually sleeping very little even when I tried to. Husband would try and settle little one in the conservatory to blank out the noise of her cries, but I couldn’t sleep thinking that she was crying. Dark thoughts entered my mind that he would try and kill her to shut her up. I crept downstairs and convinced myself I saw murderous intent on his exhausted face. I couldn’t talk about the birth or the thought that I’d nearly died. My baby carried on feeding continuously, and I asked a breastfeeding support worker to visit for advice. She gave me the sympathetic head tilt and parroted the old stomach-the-size-of-a-marble bit, and said everyone likes a snack and I just needed to carry on, as my latch was fine. I tried to get across just how exhausted I was, how I wasn’t eating, or showering, or sleeping. I asked this stranger for permission to express milk and feed a bottle so I could rest. She reminded me that breast really is best and left. What did I know. I’d never done this before. 

My community midwife came to visit and was worried about me. I wasn’t keeping up with my various medications, my stitches weren’t healing and she thought I seemed different. She asked me directly if I’d felt depressed or suicidal. I cried and confessed that at a lowest point I had fleetingly thought I would rather die than be the kind of woman who couldn’t cope with feeding her child. Then I hastily tried to backtrack, and expended all my energy one day showering, dressing and conversing brightly to prove to her I was coping. She didn’t buy it and referred me to perinatal psychiatry without my consent. They called and I fobbed them off, wanting nothing to do with them. 

My parents took the baby for a walk one day so I could try and sleep. As I lay in bed, I realised it was exactly a week since she was born, coming up to the minute. A wave of sadness overcame me as I reflected that this was not at all where I expected to be at this point post birth. Days locked in the sweaty embrace of breastfeeding, struggling to find a bond with the closed eyes and swallowing jaw that were a source of dread and regret and terrifying memories.

I began to sob as dark thoughts of suicide as the only escape crept unbidden into my mind, taking root and spreading. I called out for someone. Anyone. Suddenly, the desperate feeling of needing help and nobody coming caused me to lose my grip on reality. I dissociated to that place of terror in surgical theatre when I thought I was going to die. I let out a raw, animal scream. 

Suddenly my husband was in front of me shouting my name like a short, sharp slap. I came round, but couldn’t put a coherent sentence together. I just managed to say Ambulance…now….999… he was confused but started dialling anyway. He asked what was wrong, and from the depths of my mental health knowledge I dredged up a phrase…puerperal psychosis. 

Somehow he got me dressed, with me talking terrified gibberish, and not understanding why no one seemed to see the urgency I did. There was no time. He guided me downstairs as I wouldn’t break eye contact with him. He asked if it was safe, and I roared NO I’M GOING TO KILL YOU, I’M GOING TO PUSH YOU DOWN THE STAIRS, then horrifyingly, the words I’M GOING TO KILL MY BABY. I felt animal and dangerous and I didn’t trust myself to do anything. The trip to A&E and the wait for a psychiatrist took an age. I couldn’t understand why they didn’t rush me there. Why did they think this could wait? I felt the entire time like I was on a precipice, about to slip off into oblivion. I had to keep talking whilst all the time my mind threatened to dissociate back to terrifying memories I felt would consume me. I screamed to be locked up, away from everyone and pumped full of drugs. I wanted oblivion, numbness, escape from this mental torture. 

During my psychiatric assessment I put my fingers in my ears so husband could explain my traumatic birth. The psychiatrist tried to persuade me I’d just had a panic attack and to go home with some sleeping tablets. She mentioned the mother and baby unit, but the thought of being around my daughter terrified me as I felt convinced I would harm her and she wasn’t safe with me. 

So I went home. Baby girl had been taken to my parents house with a bottle of formula. They’d gotten advice from a helpful checkout lady in ASDA, as the on call midwife wasn’t interested in giving bottle feeding advice. We went to my parents to get some more support as advised. I coiled up on their sofa, terrified to sleep in case of nightmares but knowing I desperately needed to. I felt despicable, disgusting and unworthy of motherhood. The sight of my daughter feeding from a bottle was pure anguish. I made a gut wrenching decision that I had to stop breastfeeding so that I could start to take care of my self. That was that, no follow up advice, the end of our breastfeeding journey. 

I began to suffer from panic attacks, intrusive thoughts about harming her, harming myself, SIDS, her overheating, her stopping breathing and dirt and contamination and I would frequently wake with a start looking for her, believing I had fallen asleep feeding and smothered her. I felt myself spiralling against a tide of trauma and exhaustion and expectation and I just couldn’t process it all. Above it all was a pervasive doubt, the psychiatrist had said it was just anxiety. It felt like so much more. I obsessed over diagnostic labels – did I have OCD? Anxiety? PTSD? Postpartum psychosis? Or just the baby blues? I flushed the rest of the sleeping tablets down the toilet and asked my husband to lie through his teeth to keep psychiatry away from me. 

Before I knew it it was the second week anniversary and the time of birth was coming up again. I couldn’t stop my thoughts from racing. I was staring at the clock in the kitchen and didn’t know how I got there. Time seemed to freeze. I was aware of husband asking me if I was ok, but he seemed to be talking to me from another planet. Another century. The time never seemed to get any closer to 2.51, the time of her birth, and I became convinced that time had frozen for me because I was actually dead. I had died in childbirth. I had bled all over the floor and everything that came after was my poor dying brain snuffing out. This must mean I was still there. I was still in that hospital room and still in labour and it was all still happening. Wild and terrified again, I began to hit out, shout, scream. I had to stop this, I had to change it, I had to wake up and fight fight fight not to die. I was convinced. This reality, in my parents kitchen, it was not mine, it was a fantasy. I had to wake up urgently or I would die. I began smacking my head against the wall, the floor, straining to open my eyes to a reality that never came, hallucinating nightmarish scenes from the birth. Perhaps I was wrong. Maybe it was my baby that was dead and this was my demented grief. Where was she? DID I KILL HER? I HAD to find her, run to her, husband stopped me, I hit him, he restrained me, I kicked him in the ribs and fell on the floor bruising my back. A hundred different abhorrent realities raced through my mind. I was dead. I was dying. I was still in labour. She was dead. I killed her. Where is she? End it all. Kill yourself. Somewhere in all this I realised I was desperately ill and needed urgent help. I pleaded with husband to get me help, then would dissociate again and beg him not to leave me. 

I didn’t quite know how, but now I was in a car on the way to A&E again. It felt ok. I was going to get help. The mother and baby unit wanted to see me. Then followed days of agonising waiting for a bed, sedated and curled up in self loathing and despair. Bursting in to tears of relief at finding my way to the mother and baby unit and being reunited with my darling baby girl. Kidding myself it was like a spa. I panicked during my admission assessment and tried to run away. Shit, I’ve gotten myself locked up, I must have dissociated in to another nightmare. Why is this door locked

Slowly, the terror was replaced by a numbness that pervaded for months after I was sent home. A nurse on the unit confided that she’d seen many women driven to the brink by pressure to breastfeed. I was ashamed of what had happened and felt that I should have been able to see it coming, prevent it. What if I’d been more assertive during the birth, cared less about breastfeeding, cared more about breastfeeding, slept more, tried harder. It became a shameful secret that hung over me at every mother and baby group, every coffee morning and I felt fraudulent and false.

Gradually, I forced myself to go out, stay active and connect with people. I connected with my daughter and delighted in her company. I started exercising, took up baby swimming lessons and made new friends. I had a six week follow up with an obstetrician, who re-explained what had happened and why, and answered all my questions. I took a deep breath and asked her if I’d nearly died. She didn’t miss a beat and said no, not a chance. They’d been worried about me, but I’d always been safe. I stopped having panic attacks that day. I pushed HARD to see a clinical psychologist and talk though my experiences, we even revisited the delivery suite and reprocessed my traumatic memories. She signposted me to a drop in support group that enabled me to start telling my story and find other women who’d shared similar experiences. I got braver, and told a few newer friends what I’d been through when I was able to talk about it without having flashbacks. They were compassionate and understanding and have been my salvation. Bit by bit, I came back to life.

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