I'm currently updating this page with lots of new information. I really don't want to take it down while that's being done so please excuse any unfinished sections or typos for the moments. Lots of love!
Welcome to the updated Perinatal OCD section of Taming Olivia!
I want to start by saying how amazing it is that you're here and there's a number of reasons for that:
1) I know it's not always easy reading around these topics, it can be frightening, but that's okay because we're here together and believe me when I say there is literally NOTHING you have thought about or worried about that I haven't already!
2) Although things are changing, most people have never heard of Perinatal OCD. It is not unusual to meet a whole range of medical professionals who have never heard of it. The fact you have heard of it and are reading up on it is a huge step towards recovery.
3) I've been a Perinatal OCD advocate for over three years now. I've met some of the best people I've ever met in my life through it, I've come across some of the best resources, and some of the best organisations. I'll share them with you on this page. Remember you are not alone in the slightest! We're all here with you too!
So what is Perinatal OCD?
I wrote an article on Perinatal OCD for The British Jounral of MIdwifery. It was thoroughly fact checked by the wonderful ladies who run the Maternal OCD charity in the UK and it acts like a one-stop-shop for all things Perinatal OCD so please check it out. The article is here!
It also explains what general OCD is so if you're not sure about that have a read before you learn specifically about Perinatal OCD.
If you don't have the time, or really can't face reading a longer article, I've summed up some of the main points about Perinatal OCD below. If you'd like to learn more about general OCD please check out OCD Action, OCD UK or IOCDF.
So here we go!
1) Perinatal OCD is OCD that affects parents in the months just before and/or after childbirth. It is often also referred to as Maternal OCD, Postnatal OCD and Postpartum OCD. Keep that in mind if you're searching for information. The US in particular have some amazing resources and information under postpartum OCD.
(For the sake of this article I'll just always refer to it as Perinatal OCD.)
2) It can effect women, men, grandparents, carers, foster parents, adoptive parents - anyone put in charge of looking after a little one.
3) Perinatal OCD can effect people who have had OCD previously or it can be experienced for the first time during this period.
4) There's various theories as to why people are effected by Perinatal OCD (please see the Midwifery Journal Article - link above).
4) Although the main symptoms are all similar in that they are focused on the child, the range of obsessions and compulsions that can take place is endless. Keep a particular look out for 'hidden' compulsions. These are far more discrete and tricky to catch. They include counting in your head, praying, reviewing events, replaying conversations, repeating words, sentences or phrases in your head. Honestly the list goes on and on.
5) There are range of treatments available. The absolute gold standard treatment recommended by NICE is Cognitive Behavioural Therapy with Exposure and Response Prevention (with or without medication).
There's loads more to learn about Perinatal OCD and if you'd like to read further you can't beat the wonderful Maternal OCD website.
A Bit about Me!
Having had OCD since early childhood, I suffered from Perinatal OCD after having my son in 2012. I've shared my story as much as I can over the past few years and I'll put links to them just after this because I really want to share this first. It's so important:
I was so poorly I couldn't believe there'd ever be a time when I felt better. When I'd be able to have a normal life. I was wrong about that.
I had Cognitive Behavioural Therapy with Exposure Response Prevention and it worked.
I took medication on and off over the years and it worked.
I still get the odd intrusive thoughts but they rarely bother me.
Recovery is possible.
The reason I'm telling you this is because I would have given anything to see it when I was in the throws of what was easily the most difficult period of my life. Perinatal OCD does get better. Hold onto that. Write it down and keep rereading it if you have to, repeat it to yourself until you start to believe it... it gets better!
And here are those links to my story:
If you fancy listening to it here's my The OCD Stories podcast with the wonderful Stuart Ralph.
You'll find more version dotted about on my website and around the internet, I've lost count of how many times I've told it but I think the above are probably the most detailed.
For those in the UK, if you want to contact someone for advice, Maternal OCD work alongside OCDAction and the number for OCDAction's helpline is 08453906263 or you can email them on email@example.com. If you are outside the UK please ask your medical professional or do a search online, I don't know enough about them and don't want to risk giving the wrong information to you.
In terms of my website, you will find lots of information in the 'Contacts and Info' section, including links to social media accounts for people who campaign and advocate for perinatal ocd awareness and charities and crisis helplines that can be used if you need some support. Until my own story is written up you can read about my own experiences of perinatal OCD in the 'Meet Me' section, this post, and throughout my other blogs briefly too.
If you only take a couple of things away from this page, please make it:
1) You are not alone, there are loads of us who have either been through perinatal ocd or are currently experiencing it .
2) People recover from perinatal ocd.
I've added links to a few stories below just so you can see that you aren't alone. These may be triggering, so please consider this before reading.
Chelsea's Q and A with Alison Dotson
The success stories page on MaternalOCD.org
My OCD began around six and a half years ago. I went travelling around the world and towards the end of my trip, I started experiencing unwanted highly distressing intrusive thoughts. I didn’t know what was happening to me and I didn’t know I had OCD, or what’s medically known as Obsessive Compulsive Disorder. Over the past six and a half years I have experienced many different OCD obsessional themes. My obsessions have included intrusive thoughts, obsessions about harm, contamination, checking and relationships.
Not long after returning home from my travels I went to see a GP as the OCD was becoming severe. He said you have OCD, prescribed me an antidepressant and told me to see a psychologist. Over the course of three years I saw four psychologists who said they treated OCD but didn’t. After I got married my OCD started to become quite sever. I was desperate for help and googled OCD therapists. I found a wonderful OCD therapist from the USA who could do skype therapy. I started the proper treatment of ERP (Exposure and Response Prevention) for OCD. I had treatment on and off for a few years and was managing my obsessions to a point where I could function well.
My husband and I wanted to start a family and I was so thrilled to become a Mum. Becoming pregnant was the most exciting thing for me and my OCD knew that. My baby was the most important thing to me and my OCD knew that. Once my baby was born that’s when it attacked me and that’s when my life fell apart. As soon as my baby was born I had horrific thoughts that I would and that I did harm him. I left the hospital with nasty OCD obsessions about all the things I had done to hurt him. Slowly the thoughts became louder, very frequent and more horrific. By the time my baby was around two months old my OCD was very sever and I was completely wrecked from having the thoughts that I had harmed him every single minute of every day.
I was caught in compulsive cycles all the time. After every thought I would ruminate over the thought, replaying the events in my mind to check whether or not the thought was true. I would avoid being alone with my baby, avoid holding him and taking care of him. I would talk to my husband, mother or anyone who would listen and tell them my thoughts. From doing these compulsions my OCD grew and became much worse. It convinced me numerous times that I had done something to harm my baby and no amount of logical and arguing would satisfy it. This made me so distressed I couldn’t eat or sleep.
I would call my Mum who lived in Australia during the nights in panic. After a few weeks my husband and Mum were extremely worried about me and were discussing treatment options. My Mum flew to Thailand where we live to take care of me. Thankfully my mother in law was also staying with us to take care of my baby. This time I truly had hit rock bottom. I remember one day I just screamed, cried and sat on the floor for seven hours. We went to numerous hospitals and saw numerous psychiatrists in Bangkok to discuss medication options.
I started therapy again with another OCD specialist from the USA. We started ERP (Exposure and Response Prevention) and I did numerous exposures with and without my baby. Unfortunately I was also diagnosed with major depression which meant the ERP was ineffective. I had to recover from the depression first. This took a few weeks. I had to wait for the medication to work and I had to start behavioral therapy which included walking, eating and looking after myself. I had never ever experienced depression like this before. I had suicidal thoughts and couldn’t function. My family went through so much and were extremely worried about my health. They thought about admitting me to a psychiatric hospital in Australia or flying to the USA for treatment, but I didn’t want to go anywhere without my husband and baby. It was truly awful.
Thankfully the medication began to kick in and I could start daily ERP therapy again. My treatment consisted of daily skype therapy, two sessions a day for a number of weeks. Over the course of several months the sessions became less frequent. The medication saved me. It got me out of the depression and I was able to function better and return back to work. I am now very much in the maintenance phase. I see my therapist once a month for thirty minutes and we do the Yale-Brown OCD scale test (an indicator of OCD severity). We chat about my progress and what I am doing to help my recovery. I still need to do exposures and my focus always has to be stopping all compulsions.
OCD targets what’s most dearest to you in your life. For me this was my baby. My OCD convinced me daily that I had harmed my baby, that I would go to prison and that my life was over. The unconditional family support I received, medication, my OCD therapist and extremely hard work was what got me through. I still have thoughts but the difference is now I do my best to stop all compulsions which has allowed me to continue to work, function well and beat OCD more than I lose.
There is no magic cure for OCD but ERP is proven to be a highly effective treatment. To gain freedom from the tortuous thoughts we must accept them and embrace all the uncertainty around them. We don’t choose or control our thoughts and anxiety, but we can choose our responses and we have complete control over our compulsions. For all the Mum’s out there experiencing Postpartum OCD you are not alone. There is support and with hard work, motivation and dedication you can live your best life.
I’ve always been described as a worrier. My whole life. For a good 25 years of that life, I didn’t realise that I had OCD. Obsessive Compulsive Disorder, and no, I didn’t like everything clean and well-organised, because if I liked that, it wouldn’t be OCD it would just me liking everything clean and well-organised. No, I suffered the lesser known version of OCD, Pure-O. Or, as a lot of people call it, intrusive thoughts. Debilitating intrusive thoughts, that would totally paralyse me and would force me in to a lot of unwanted emotions and feelings making me question my character, personality and decision making. You see, for many years, I didn’t know that people also called this type of mental illness the doubting disease. Looking back now at my life, I can see now that OCD has always been there, ready to pounce and many times it has.
My first real memory of anxiety was when I was about 5/6 years old and I was reading my book in bed and I began to feel sleepy. Then I shot up, my brain had just fired a warning to me. It said, ‘don’t go to sleep, you might not wake up’ and so I forced myself to stay awake most of the night. Crippled with anxiety, in the early hours of the morning, I snuck into my mum and dad’s room and whispered in my mum’s ear, ‘will I die if I fall asleep?’ This was the start of my OCD journey.
Now, I won’t go into masses of detail about all my OCD episodes, that would take far too much of your time but the themes included: sexual orientation, health anxiety and harm OCD. I am here, now, to talk about the most excruciating subtype of OCD I’ve ever experienced and that is Post-Natal/Perinatal OCD.
November 2017 – 5am – I take a pregnancy test. Pregnant, it reads, 3-4 weeks. I was elated. This is all I’ve really ever wanting, particularly in the last 2 years. I spent the next 9 months carefully planning everything to do with my baby. And, although, my pregnancy wasn’t straight forwarded I was beyond excited about the future. April 2018 – gender reveal party – it’s a GIRL! Yes, my own little mini-me. This is going to be the best journey ever. Early July 2018 – growth scan, there was my baby in my tummy, all tucked away and happy but next to her, a 17cm cyst, so I’m booked in for a c-section 2 weeks later. July 19th – 8am – going into surgery and the doctor tells me that I’m going to be on epidural for at least a day. 10.10 – baby born, 6lb7oz, lots of hair, beautiful lips and eyes. I cried. It’s the happiest moment of my life. Anyway, 48 hours later (and sustaining 3 grade 3 pressure sores, an incorrect procedure and a bloody awful scar) we get to go home.
For the first two weeks, I so concerned about my daughters health, I believed there would be something wrong with her. As much as the midwives/health visitor/doctors checked, I wouldn’t believe them. Thoughts starting consuming my mind ‘she’s ill’, ‘she’s going to die, ‘what if I can’t do this’ at the time these thoughts were breaking my self-confidence and questioning everything I was doing. What I didn’t realise what the worst was yet to come. 5 weeks old, I’m driving my little girl home and I get a thought ‘what if a car goes in to the back of me and kills my baby?!....What if I didn’t care if that happened?!’ From then on, I suffered the worst bout of harm OCD I can ever imagine, all intrusive thoughts directed to my beautiful daughter.
Sleepless nights, and not the normal ones you should be having when you have a newborn, but, nights when she would be sleeping completely soundly and I would be wide awake dreading the next day thinking ‘what if, what if, what if...?’. I was having a complete identity crisis. I couldn’t look into the future without thinking of myself doing something terrible, I couldn’t look at my daughter without thinking something dreadful happening to her and, worse, me doing something dreadful to her. OCD was taking over my life. I would cry when my partner left for work. I would ask at the door ‘you do trust me, don’t you?’, ‘am I evil?’, ‘you would know in the years we’ve been together if I was capable of doing something awful?’ All questions he answered, providing me the reassurance I was craving, all of which, unknowingly, was making me feel worse and fuelling my OCD.
I would also research online, reading threads on intrusive thoughts about mothers and their babies/children. I refused to leave the house, refuse to clean the house, prepare tea or wash up. I never ever neglected my daughter’s needs, I was perfectly able to take care of her and cuddle her, feed her and change her but was in complete fear when doing it. What I didn’t realise what I was giving into my OCDs compulsions, avoidance and reassurance seeking, all of which were giving attention and significance to my intrusive thoughts, a significance that wasn’t needed. You see, when I would talk to my nearest and dearest about how my mind was functioning they would say ‘thoughts are just thoughts’ but I wouldn’t believe them. Surely, if I was thinking it, I must mean it? No. This is totally wrong. But recovery is not as easy as just thinking ‘thoughts are just thoughts’. Through, my constant online researching on OCD (a compulsion that I am so glad I did’, I came across a story written by a mum who went through exactly the same. I contacted her and another lady, and they helped me through my darkest of days. Finally, I had found someone who understood exactly what I was going through, with no judgment and (to my dismay at the time) wouldn’t succumb to my compulsions. However, I needed more. I needed proper professional help.
Now, almost 10 months later I am almost recovered. I went through the grizzly and exhausting gold standard treatment of OCD, this being Exposure and Response Therapy and I am thoroughly enjoying my time with my daughter. She’s awesome but hard work! I treasure my relationship with her because I had to work for it and she is totally worth it even when she’s being a little madam. And I also know that I am not the only one that has been through, and unfortunately, not the last one to go through this experience. But I want to tell my story to help whoever is struggling with this horrible illness, there is hope. I can see why you are, but don’t be scare to talk or seek help. I was, but now I’m not. I’m not scared to seek help and talk when I need to. Cut those compulsions, expose yourself to your fears, stop searching for the answer to your thoughts...it is never going to come. Live with uncertainty. Live according to your values and beliefs. Look into that mirror and tell yourself you’re a beautiful caring person. Seek professional help from someone who understands your illness. It’s the only way to beat the bully that is OCD.