Written by Katie, a Winston’s Wish content creator
I have never been formally diagnosed with OCD; I have only discussed with therapists related traits I express. While I feel I can relate to common examples of OCD-induced behaviours and the forms of anxiety it brings on, I’ve also never experienced severe symptoms of OCD. So, this piece of writing is nothing more than one about my own understanding of OCD in relation only to my experience of grief and childhood bereavement.
Anxiety, at times very severe, has played a major and consistent role in my life since the bereavement of my dad, who died by suicide when I was nine. After a significantly delayed reaction, the first emotional response I remember having was a fairly sudden onset of seemingly unexplained anxiety. Of course, this is expected and explainable, but at the time when it seems like you go overnight from happy, carefree, playful child to a health-concerned and angst-ridden young person, you ask yourself what is happening.
“There was always the idea that if this little movement wasn’t made… a horrible thing would happen to my family”
This high level of anxiety felt extremely controlling on my mind and brought on confusing and strange pressures to do things in a very specific way, or a certain order, completely arbitrarily. There was always the idea that if this little movement wasn’t made or the words weren’t said a number of times, a horrible thing would happen to my family and me. A simple example might be that every time I turned on a tap, I would have to turn it on and off three times before using it. It makes no sense and there is no logic behind it, yet the external force I felt to do that action was sometimes irresistible.
For me, my experiences with OCD traits like this have tended to involve similar behaviours to this example: having to perform little acts a certain number of times; keeping things in straight parallel lines; as well as generally feeling the urge to clean a lot and keep the spaces around me very neat and tidy, regularly to an excessive degree.
This expression of my grief through OCD-like and obsessive traits is often contradictory. Certain behaviours calm me down while simultaneously giving in to my stressful desire for perfection. This feels like quite a niche thing to explain, but it basically means that while a lot of the time I feel I can’t relax and rest until the space I’m in is excessively neat and tidy, it is also the act of tidying that I find relaxing and fulfilling. I don’t know if this is something that will resonate with many people but if it does, I hope it provides a degree of comfort for those who feel lost in their various mental health struggles, some of which may manifest themselves in these physical acts and behaviours.
“I really couldn’t cope with the idea of leaving my mum”
Separation anxiety was one of the first major emotions of grief I experienced following my dad’s death. I really couldn’t cope with the idea of leaving my mum, even if that was just her dropping me at school or going to the shops. It terrified me and I had to get her to promise me things would be okay every time we separated, even just at night for bedtime. This has also definitely been one of the longer-lasting emotional difficulties for me, for example, as much as I love travelling abroad, I find myself quite anxious when I’m far away from home and my mum… Even at 25!
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If I’m trying to be analytical about the significance of OCD in my grieving process, it’s in part about regaining control and trying to avoid surprises, in an unconscious way. I’d just experienced the most traumatic and shocking event in my life, aged nine, and naturally my brain needed to find a way to have everything else in order, controlled and almost mathematical so that I felt in control of everything else that I could possibly be in control of.
It feels like there’s an endless amount to write about OCD and grief, and these experiences will be so different for everyone. But I hope that at least an acknowledgement of the commonality of these experiences can provide some young people with a bit of reassurance that these feelings are normal, and you won’t feel the way you feel now forever.
Coping mechanisms
Unlike some other effects of grief, OCD has fortunately never become an overwhelming issue for me. I’ve found ways to take control of and minimise its significance. I’d say that what has worked best for me has been to just bite the bullet and completely refrain from listening to the surprisingly powerful urges to follow these totally irrational rules that seem to have so much power and meaning behind them and yet are so arbitrary. If my mind says I need to close a door in a certain way, type a certain number of kisses on a text message or clean something five times before I use it, I will purposely not do it. I’ve found that this makes every other time that urge comes, significantly easier to ignore.
When it comes to supporting someone else experiencing OCD, from my perspective as someone with most likely mild OCD (which often comes out in public places, like work or friends’ houses) the most important thing that has comforted me is knowing others recognise that I’m not being difficult or a perfectionist. I needed people around me to be patient and understand that there are reasons I might do seemingly strange little behaviours.
I think ultimately a lot of people have various experiences with OCD and social awareness of it is wide. But perhaps it needs to be generally better understood, including that it can show itself in many different ways and be very different from person to person. Even if you think you understand it because of your own experiences with it, others might have opposite urges, or generally very different understandings of it.
How to get help
If you’re struggling with grief right now, Winston’s Wish is here to help and here to listen. Winston’s Wish provides support for grieving children and young people (up to the age of 25). We offer one-to-one and group support sessions. We also have lots of online resources and a Helpline and email service where you can talk to bereavement professionals.
You can call us for free on 08088 020 021 (open 8am-8pm, Monday to Friday), email ask@winstonswish.org or use our live chat (open 3-8pm, Monday to Friday) and find out more on our Get Support page.
If you need urgent support in a crisis, you can contact the 24/7 Winston’s Wish Crisis Messenger by texting WW to 85258.