Trigger warning – mention of intrusive thoughts and suicide X
Last night at the TV soap awards , Lacey Turner won best actress for her portrayal of a mum with postpartum psychosis. Her acceptance speech was short and moving and reduced even my hubby to tears. And my six year old to say , mummy , did Lacey just say your name ?
And she did. Lacey played a character called Stacey who developed psychosis after having her baby just like I did and just like my friend Kathryn did. Last year, Kathryn and I were asked to help Eastenders develop the storyline to ensure it was realistic and they were adamant that they couldn’t do it without input from families it had happened to. We worked with the charity Mind , particularly Jenni and Ali , who ensured the storyline wasn’t sensationalized and met with the actors to give them details on what it was like when we were ill. Lacey was really keen to know what it’s like to hallucinate , what your mind is thinking , does it feel real to you in that very moment, what did our arms do, what were our facial expressions ? James Bye who plays Martin met our husbands to see how he should play his role as carer and the researchers continually asked us ‘would this happen ? Is this realistic?’. They wanted our real life stories to help them play out this story on screen to show the public a realistic portrayal of a mental illness no one had heard about.
After I watched the awards where Lacey so graciously thanked the charities who helped shape the storyline and Kathryn and I , I wrote a Facebook post that said ‘ this is why we tell our stories’ . During the storyline , Kathryn and I received literally thousands of messages saying Eastenders have done this so well/it’s given us hope our daughter will recover/wow, how did Eastenders get this so right? And they did because we shared our stories. There is no evidence better than lived experience.
It’s not just eastenders that has shown me the power of sharing your own story to help others. I’m friends with brave beautiful people who feel ready and able to share theirs to help others understand what going through a mental illness is like and how to help the person in front of you who appears to be totally different to the person you once knew.
Such as my friend , I call her Dr Amazing Nails and she is probably the best GP in the entire world. You may know her as @DrSdeG on Twitter. She has the best talons I’ve ever seen , has been known to sleep in her gym wear and is vibrant , funny and not afraid to tell people when they are talking so much drivel ,they may as well have marbles in their mouth. She also had PND.
I know this because last year, I was at a GPs conference on perinatal mental health and Dr Amazing Nails didn’t have her GP hat on that day – no , she was delivering a speech about her experience of mental-heldom after having a baby to a load of other GPs. She was nervous as hell and when I rolled in munching on a celery stick, a Milky Way in one hand and a pair of stilettos in the other with a pile of scrunched up papers looking wholly inappropriate for a super posh balls conference, I ran over to her to give her a ‘you can do it’ cuddle. ‘ Dr Steph’ I exclaimed when I saw her sitting down with her laptop , her presentation in ten minutes. I dropped my celery stick on the floor and then turned round and clobbered what was probably the head of the NHS in the face with my Milky Way and then exclaimed as I emerged from the floor while retrieving my celery ,’ bloody hell, when I bend down , me knickers roll under my pastry flap of a stomach and when I stand up , my bra rides up and I look like I’ve got four boobs’ . I looked at Nailz and she started laughing and we wandered in to the conference room, her looking as professional as a hobnob, me yelling oh look, our friend Beth is here and running to the front to get a good seat next to her so we could keep giving thumbs up to the good doc and grab the microphone and give a good old verbal dressing down to anyone who dared to be negative to her.
Nailz stood up and went to start delivering her presentation. She took the microphone and went to speak and then stopped . She let out a deep breath , shook all her arms and legs and said , right , that’s better and began. Out came her story – a strong woman , an amazing GP telling her comrades about her illness. Beth and I looked around – there were open mouths , people unable to believe what they were hearing . Remember , these people have probably seen hundreds of women come I took their doctors office , some with perfect make up looking like they are made of china they look so slick , some with baby poo in their hair and in a pair of pants they have folded inside out as they have been too scared to go into the kitchen to do the washing as they don’t want to be near knives because of the intrusive thoughts that are flashing through their head, saying , I feel awful, I don’t think I like my baby, I can’t stop crying , what have I done , I can’t sleep, I’m thinking weird things , I can’t leave the house without having a panic attack or some not speaking at all. And some of the doctors were probably great and say right , this isn’t good but there is help and let’s get you on the road to the recovery you deserve. But some wee probably the not so good ones , the oh, women have been having babies since dinosaurs jogged on. Your vagina has recovered from the extraction of said baby as will your mind, think happy thoughts and pull yourself together.
So to see Dr Steph talking about her experience was an amazing thing. To show it happens to anyone , it’s real and that women need help. And they go to their doctors for help. She talked about going to her own GP and it was incredible to see how one women sharing her story had such an impact on a group of people who really needed to hear it.
I tell my story because I feel ready and I feel able. I look at Jonny Benjamin sharing his painful tale and how he has opened up the conversation about suicide. Suicide has been the unspoken rule for many years yet it is something that many of us have experienced – I reached suicidal depths when I was unwell and my husband lost a friend to suicide a few years ago. All of us say the same thing – but why , they had everything to live for ? And until I was unwell I said the same thing . Never thinking bad but a real feeling of not being able to understand how those feelings can ever enter your mind. But when you do experience those feelings, my goodness, it’s terrifying. All the awful words you can think off. Jonny’s documentary about finding mike, the man who talked him down from ending his life ,was so open , so raw , so painful and so touching. Jonny sharing his story has enabled so many to say, you know , I have those feelings and I deserve not to , I deserve help to feel better. And that is the power of sharing.
I was at Elaine Hanzak’s book launch last year where many of my friends spoke including Tracy whose blog is here , https://amummyrecovered.wordpress.com/ and two of my dearest friends, Beth and Jessica. Jessica was unwell and has used her experience to set up Cocoon , a wonderful perinatal mental health charity in London http://cocoonfamilysupport.org/our-story/ and is helping so many women to recover. And Beth then spoke about her experience of being unwell after having her son. Her story is here https://bethbone.wordpress.com and I urge you to read it. It’s a long brave battle and Beth is here to tell the tale. She told this story so movingly at the book launch, healthcare professionals were in tears and Kathryn and I saw two people mouthing to each other how in awe they were of Beth sharing her story.
Millions of women across the world have done , are and will suffer from perinatal mental illnesses and many more will suffer from the vast range of mental illnesses that there are. These can be helped by medications, therapies, understanding and other things that complement recovery but there really is nothing like seeing that others have experienced similar to you and got better/recovered. Everyone’s experience will differ slightly from somebody else’s and their illness and recovery will be different to yours but seeing how someone pulled through to recovery or to live with a mental illness in a positive way is such an incredible tool. It gives hope when all seems lost. When you have reached such depths where you think you can’t leave the house to go to work because visions of jumping in front of train are overwhelming you , when you can’t bear to open your eyes as the fear of another day makes you scared of being alive, when you can’t take a breath as each one is filled with a panic you never knew possible , to know that it is possible to pull through because you have read or heard the story of someone who has , that’s incredible.
Let’s talk about something like intrusive thoughts. Because we simply don’t talk about them , they aren’t even whispered about. And so when you experience them you think , fuck an absolute duck , why am I envisaging these things ? Am I a monster and why are these things flashing through my head scaring me ? Take a mum who may be experiencing these. Looking over Twitter the common fear is that if you tell a doctor you have had intrusive thoughts that involve your baby , that they will swoop in and take the love of your life away from you. Which would be the most catastrophic thing to do ever. But you know what ? Something like a Twitter chat where people talk about these thoughts and then medical professionals advise that you won’t have your child taken off you for revealing them can ease the mind of so many. This happened on the #pndhour run by @pndandme on Twitter on 30/03/16 and 14/10/15.
My friend Laura describes these kind of thoughts like they are a ‘Horror movie in your mind'( http://thebutterflymother.com/2015/05/10/intrusive-thoughts-horror-movies-in-my-mind/ ) and my friends at The Smile Group charity made the brilliant point that they can make you feel very vulnerable . They also then made the ultimate point – in order for people to reveal they have them so they can get the help they need to stop /deal with them , there needs to be a trustful relationship with the health care professionals who they reveal them to.
This Twitter chat also allowed for these healthcare professionals to say we won’t take your baby away , it’s ok to tell us, we will help you. The power of a chat like that has been incredible. People at home have this resource to read where people have shared their stories of not being able to drive over bridges because of certain thoughts flashing through their head and see that they aren’t alone, but it doesn’t end there. They can see there is help, that they won’t be judged and also give them support and advice on how to get help.
During mental health awareness week a couple of weeks ago, I was on something of a presentational revolving door . For those who know me well, I am brash and say things most other people wouldn’t even think and am very confident in myself. However , I also suffer from absolutely chronic anxiety of talking in public – I have been known to vomit before team meetings ( the team I sit next to and talk about all manner of things with , with no shame) and to have panic attacks before telephone meetings. I think when I have to deliver things professionally , I fall apart somewhat. Before my radio five interview about eastenders , I sat down and suddenly thought, what the bloody dickens, this is live?????? I can’t do this and then realized I couldn’t leave the room a) because James Bye who plays Martin in eastenders was in the chair by the door and I wouldn’t have been able to get out without climbing over him and there was a web cam on us and it would have turned into a total disaster and I would be on the front pages for having to be surgically removed from a soap star and b) while plotting escape route, the presenter said , now Eve , can you tell us your story and I thought erm , well I have to do it now don’t I ? And I did. And I didn’t embarrass myself or be sick on my dear friend Kathryn or rugby tackle the famous actor to the floor .
So when work said oh Eve , it’s ok if you do three presentations on mental health awareness isn’t it I said oh yes , of course. And then went home and said to John, oh my god, what have I done. But you know, I thought , I’m sharing my story and it’s helped people and I’m just going to be myself. I did a presentation with my lovely friend Lucy ( whose post on our presentation and experience of recurrent miscarriages is here https://whathappenedtotheplan.wordpress.com/2016/05/28/not-just-one-week-my-5-prompts-for-making-mental-health-matter-throughout-the-year/ ) about our MH experiences and I started my piece by saying , I am anxious, I might cry, I might forget my words but I want to try and tell you what I went through, what helped me get better and to inform and empower you. And the session could not have gone better. When it came to question time , one or two hands went up and then all of a sudden ,we were still there 90 mins later, engaged in an open conversation. I had said I would give my sanitized version of my illness which means I leave out the parts about when I wandered around the bathroom with a razor blade and ran around naked but those parts came out. I then talked about intrusive thoughts and how terrifying and debilitating they can be – I got back to my desk to four emails from people saying they had suffered these before and never talked about them. I sent on some support page and charity details to these people and truly saw how sharing a story can open up to help others.
I have read things that say people shouldn’t share their story because of the trigger effect it could have on others and that we have a responsibility for what we write to ensure this doesn’t happen. Yes, things need trigger warnings. Do not read things if you feel vulnerable . It’s ok to stop and come back to it another day. It’s ok to stop and never go back and finish reading. And it’s more than ok and a definite cert that if you read or hear something that triggers you and you need help, you seek it and seek it immediately.
But I ultimately think there is an enormous positive power in a story told. To hear the tale of someone who has been through it is worth a thousand nodding doctors who have treated someone with it. Healthcare professionals are amazing and I owe my life to them – going into a psychiatric unit was truly the best thing I ever did. Taking the medications doctors told me to take saved my life. Having EMDR therapy allowed me to rid myself of the traumatic demons my psychosis had left me with . But all of these didn’t give me the one thing I needed and that was the hope that I would get through it because someone had before me.
I truly don’t think Eastenders would have been as powerful as it was without the team there talking to Kathryn and I and the great team from Mind who also divulged their own mental health experiences to inform the story. A few months before, Eastenders covered a stillbirth storyline with equal care . It was touching and heartbreaking and the actual stillbirth episode was so incredibly raw, it almost seemed real. They worked with people with lived experience for that storyline also and you could tell. And I know someone who experienced stillbirth at 38 weeks pregnant who says watching the episodes has made her realize that she is ready to talk about her child and what happened . And her aim ? To help other mums. To show them that things don’t necessarily get ‘better’ but that with help and support,life can continue in a very different way but it can continue.
That’s real. That’s the power of sharing a story. It’s not for everyone but if you feel ready , able and want to , then please know that your strength in sharing will give someone else strength when they are suffering . It may not be pretty in pink and a glitter bomb of joy but whose story is ? All of experiences are as different as our bra sizes but ultimately , we all need a good bra to support us don’t we ? If your boobs were bursting out of the side of a 32c , cutting into you causing you pain and grief and then caused you to almost gauge your eye out with a rogue underwire, you’d probably ask your mates if it had happened to them and where could you get a good bra that gives you good support and one that’s doesn’t cause your boobs to be dragged down lower. And you’d take their advice and seek out said fancy pants bra that serves its purpose – it lifts up and positions your boobs so they don’t drop or cause you pain anymore.
And that is why we share our stories. Not for fame , fortune, applause or blog hits. But to help those because we were once them. So they can get a sense of hope that things will get better and that they aren’t alone. And that they can then seek support to life them, so their thoughts and feelings don’t drop and cause them pain anymore .
I may not be the same bra size as you but take a look at mine , take a look at others and see if there is something about it that could help you.
You never know. Because everyone needs a good bra in their life.
My story is here https://youtu.be/Kn6pgSUP5YI