Speaking the Previously Unspeakable: My Story
Updated: Nov 26, 2021
***Hey guys! Even though this was written in 2017, it is still the most comprehensive version of my history of OCD in written form. I like to focus mainly on recovery but I'm really happy to share this in the hope it stops people from feeling alone with, what can be, a really tricky condition. If you prefer to listen rather than read, please check out my story here, on the wonderful The OCD Stories Podcast.
Hi everyone! My name’s Catherine, I’m thirty-seven, I live in London with my husband and my son, and I’ve lived with OCD for as long as I can remember.
Since very early childhood, my condition has often morphed and shape-shifted, seemingly changing obsession as soon as I become skilled at managing my current one - it likes to keep me on my toes! Over the years it has also varied in severity and intensity with whole segments of my life being totally OCD free, to others where I’ve really struggled.
Although I usually make my road to recovery the focus of my writing, I’m going to put the emphasis for this piece on my experiences with OCD - especially postnatal OCD - with a little extra thrown in about harm based intrusive thoughts and accompanying bodily sensations.This’ll be the first time I’ve written about some of my experiences and I’ve chosen to do it now because I know there are loads of us out there affected by this - it’s a very isolating part of the condition, and I really want to help people to realise that they are not alone, and that recovery is totally possible.
Right, here we go…
My childhood was very much focussed on keeping my loved ones safe and my OCD symptoms centered heavily on external compulsions. I counted, checked… recounted and rechecked everything because I believed it would help keep my family safe. I spent whole evenings watching out of the window for my parents to return from work believing this silent vigil would secure their safe return, and at my worst, it took me three to four hours to settle into bed because I was busy walking the well-trodden pathway of my night-time safety checks.
Throughout my childhood, my OCD was hugely time-consuming, and there were many times where I was heavily reliant on others to do the simplest of tasks. I became an expert at hiding my symptoms and didn't tell a soul. I feared, even back then, that talking about it would get me labelled as ‘weird’ or ‘different’ and bring shame on my family. Occasionally, I’d get busted as my parents heard my wandering or whispered counting. They would sit with me until I was settled, believing me to be upset about something at school or going through a phase. This was the eighties; mental health awareness was not what it is today. Argh, I feel old saying that!
I had no idea I might have OCD until my mid-twenties; I’d heard murmurings about it for a while, on tv etc, and could identify with the symptoms. Around the same time my gp mentioned he thought I might have OCD so that’s what these symptoms became for me. Now that it sort-of had a name I broke my silence - I told my future husband, my mum, a couple of close friends and hoped against hope that it would all go away by itself.
I’m summarising a lot of information in few sentences here, but I should also mention, that as I progressed through my twenties, I also developed the symptoms associated with generalised anxiety, daily debilitating anxiety attacks and depression. These, along with my OCD, came in phases and I experienced big gaps with very few symptoms at all. It was during one of these periods of having my symptoms well managed that I became a qualified teacher, I began living with my boyfriend, we got married and adopted a beautiful stray cat, my lovely boy Archer. Life was busy and productive, I was happy and content. In 2012, we decided to extend our little family and I gave birth to a beautiful little boy, William, in September. It was at this point; the point Hollywood tells you should be the happiest time of your life, that I saw my mental health decline to crisis point.
I should just point out that throughout the following section I’ll refer to my symptoms as OCD because I know now that’s what it was - I had no idea at the time!
Very soon after I’d given birth, I became absolutely convinced that something bad was going to happen to my little man - that he’d be harmed or that he would die - he was so small and vulnerable. This worry quickly grew into a fear that someone would hurt him by accident, which in turn grew into a fear that someone would hurt him deliberately. I can’t tell you the lengths I went to, to keep my little boy safe. I put household objects that I deemed too toxic for the house in the front garden. I barricaded us into our bedroom at night in case my beloved Archer sat on Will and suffocated him. I set alarms throughout the night so that I could wake up to check he was still breathing. As time went by both my obsessions, and their resulting compulsions, became increasingly irrational and time consuming. I sat guard over him to protect him from… life – I can’t think of a better word to put here, I wanted to protect him from everything and everyone.
As the weeks passed, my mental well being continued to decline, and I was hit with my worse obsessions yet – I became convinced that it would be me who would deliberately hurt William. I was tortured with images and thoughts about this twenty-four hours a day. The worse part of it, was that I began experiencing spikes of anxiety and woerd bodily sensations alongside the intrusive thoughts too. They felt like urges and thanks to OCD, that's exactly what I interpreted them as. I honestly thought I was a monster who wanted to hurt my child.
I could just about live with my previous OCD symptoms, but the bodily sensations that felt like urges saw me hit crisis point. I could no longer be in the same room as my little one. I made an appointment to see my GP in which I told him I was a risk to my son and needed to be ‘taken away from him for his own safety’. I remember saying those words as clearly as if it happened yesterday.
Thankfully he recognised my symptoms as anxiety and prescribed anti-depressants. I cannot tell you the terror I felt at visiting the DRs that day. I thought I would never see my family again.
The medication helped to lower my anxiety but didn’t do much for my OCD symptoms and it was only after hitting rock bottom again and doing a little online research, that I self-diagnosed with postnatal OCD and self-referred to CBT. I had no idea up until that point that these thoughts and feelings were anything to do with OCD - I honestly thought I was a monster for having these obsessions. I didn’t know that compulsions could take place internally as a kind of mental ritual or review, and I had no idea that these weird bodily sensations were in fact a very common accompaniment to intrusive thoughts in OCD.
Sadly, this was also the case for the medical professionals I met. My midwives, health visitors and doctors were supportive, and clearly wanted to help me, but they were minus the training needed to help recognise the multitude of ways OCD can present itself, and as a result I slipped through the net for a while. I also went through the horror of a threat of referral to social services - there was mention of my little one being added to the 'at risk' register. All because people didn't understand the way OCD presented. I'll speak about this and how to get help when you are worried about disclosing the nature of your intrusive thoughts in a future blog. Keep an eye out for it.
I will never forget this time. When I think back to how poorly I was then, I realise how far I have come now, and that if I can get through that phase of my illness, I can get through anything.
So, onto recovery... In March 2014, I was introduced to the most amazing psychotherapist and my experiences of motherhood turned a corner. I had two sets of twenty weeks of CBT. I had to work hard, after 32 years my thought patterns were rigid and took a while to shift.
The road to recovery was not all plain sailing for me. I lost my parents and my beautiful cat during this time. I’ve had setbacks surrounding grief and my original OCD, anxiety and depression symptoms, and I’ve continued to experience anxiety attacks. But what did come out of that adversity was an absolute desperation to get better which, in turn, propelled me into action despite still being very poorly. From that moment on, my well-being and health became the center of everything.
I could talk about this forever but what follows is a summary of some of the things I did, and still do, to help with my recovery. I’ve written about it a lot in my previous posts so please check them out if you would like more information.
One of the most helpful things I did was to learn everything I could about OCD - I’m still learning loads all the time. I came across mindfulness in my therapy sessions and found it very helpful, so started incorporating into my daily life. I made sure that I completed my CBT homework and carried out my ERP exercises - which at one time saw me going up and down the higher-level escalators in an M&S with my son in my arms – such fun! This was to help address my harm based intrusive thoughts and associated bodily sensations, both of which were very strong in this area of this specific shop. How I didn’t end up with security guards following me around I’ll never know!
Self-care became key. I decided to stay on my medication because it helped me to access my therapy and feel well enough to carry out self-care activities. I started exercising, not running – which gave me too long alone with my thoughts – but Zumba and fun dance classes. I ensured I got a decent amount of sleep. I saw my friends more, I got out more. I spent time in the sun. I started to take supplements. I tried to eat well and drink enough water. I read everything and anything I could about self-care but mostly I made sure I did it - if I felt I was getting lost in reading about self-care and not actually practicing it, I tried to adjust my behaviour.
Thanks to social media I was introduced to the online OCD community. A community made up of some of the strongest, kindest, most compassionate people you could meet. It helped me to know that I wasn’t alone and that I could get better. Checking out groups, pages and profiles of people who had OCD, and had similar stories to my own, was life changing! Again, if I noticed that this became triggering, or a compulsion, I backed off a bit.
I did a huge amount of self-esteem building. The nature of my obsessions meant that my view of myself was at rock-bottom and I found this work central to my recovery. I needed to really care about me and my experiences. I needed to feel I deserved to get better and that I could begin to accept what I’d been through. I needed to get my head around the fact that all brains produce random thoughts, and images, and sometimes they in turn produce weird and uncomfortable bodily sensations. Experiencing these things wasn't the problem - it was my interpretation that was. The interpretation that was guided by OCD.
Listing everything like this makes it sound quick and easy – it really wasn’t (she says with a grimace). It’s been five years since the onset of my postnatal OCD and I have spent at least three years actively walking the higgledy-piggledy road of recovery. I still use prompts to remind me to carry out certain self-care activities, and I don’t always do them even when I can see them written down, because I’m human. And I mess up. Often. While it’s not been easy, every step I took along the way was totally worth it. I still deal with OCD daily, but it is far more manageable now and it very rarely stops me doing anything. So, if you are struggling with OCD please have hope. It really does get better and, despite what that troublesome brain tells you, you are not a monster and you, most definitely, are not alone! 😊
I've never been very good at posing for serious pictures - here's me making life difficult for Pete 😬
Read how Olivia helped me with recovery here.
Self-love and self-compassion were central to my recovery. Read how I started to learn how to develop both here.