OCD? – Don’t expect a tidy room!

Anyone who has OCD, or knows anyone who has OCD, will know that it isn’t a simple condition that can be explained in a sentence; yet so many TV shows try to do just that. The best known show is probably Channel 4’s ‘Obsessive Compulsive Cleaners’, that sees a couple of people with OCD cleaning the home of someone who hoards items. The property tends to be full to the brim with personal possessions, several years worth of dust, thick cobwebs which are strong enough to be used as nets, rodent droppings, dead rodents, living rodents, critter infestations and unusable bathrooms and kitchens. The people that live in these houses are clearly struggling and need support, but I don’t think humiliating them is the correct way to help them. So, the people with OCD go in and express their disgust, the home owner expresses their ambivalence, they disagree, the people with OCD announce they have to leave, the home owner wants them out, they talk and then get on with cleaning the house – tada, magic!

There are probably 2 different forms of OCD shown in this programme; cleaning and hoarding. However, that has somehow translated to ‘everyone with OCD loves cleaning’, which simply isn’t true. (I’ll just add here that some who do have OCD in a cleaning form, wouldn’t be able to even contemplate stepping inside a property like that, let alone touching anything!)

OCD can be, and often is, a disabling condition and it has many different presentations. Some will require things to be spotlessly clean, some will repeatedly check things, some people will be unable to leave the house, some people will struggle with intrusive thoughts and some people will have a mixture of forms. There are many, many other types and this page explains them well – Types of OCD

At the age of 3 my parents began to notice that I was a little quirky in the way I did things, but as time went on it became apparent that it was more than the ‘normal’ child quirkiness. At the age of 7 we witnessed an accident whilst on holiday, I won’t go into it because it feels wrong to do so, but a man died, a family were left heartbroken and my dad, along with another holiday maker were involved in the events that immediately followed that single moment of error. My brain was already wired slightly differently, which was very apparent at school and when I was around my friends, but this incident caused that to intensify tenfold. The world terrified me and everything became a potential danger; I had to protect the people I love from the horrors that hid around every corner. I didn’t want to spend any time apart from my mum and dad, if I was always with them then nothing bad would happen. If I could make sure my little sister was safe, if I could make sure appliances were off, doors were locked, the heater wasn’t leaking gas, the things in the fridge weren’t over their use by dates and make sure I did everything my OCD told me to do in order to erase the horrible thoughts that attacked my mind then it’d be okay.

Being an anxious child meant that school could be quite tricky at the best of times, I enjoyed learning but the socialising part of it was often quite problematic and I just wanted to be with my family. I would become very upset very quickly and I was very aware that my way of doing things was different to others and whilst I learnt to hide the majority of my OCD behaviours, sometimes it wasn’t possible to hide it. I’m going to write about a few experiences I had in a different blog post as I want to tackle those slightly differently.

My OCD has taken on various forms over my life, but they’ve always been heavily based around responsibility and fear; being responsible for something bad happening, for allowing harm to happen, for allowing unsafe situations, for not realising that I have a responsibility, because it’d be my fault if anything awful happened. OCD forces thoughts and images into your mind, and for a long time I thought that this meant I was an evil person, who else would think such horrible things? People tell you not to think about things that upset you, so I tried not to think about any of it, but the more I tried to push it all away, the more forceful the thoughts became. They terrified me. If I’d thought it then it might happen, so compulsive behaviours would come into play, but they had to be done in a very particular way, without interruption or questioning or else it’d need to begin all over again. When I learnt what the term premonition means, I was so frightened that I might be having them and I was seeing what was to come; I thought that maybe the only way of stopping them from happening was if I was no longer around to think them. As an adult, this is all very scary, but as a child it’s so confusingly frightening; the world is full of monsters but perhaps you are just another kind of monster.

Whilst the thoughts around being evil and needing to disappear to prevent bad things from happening aren’t anywhere near as powerful as they once were, they are still very much there, sometimes more than others. People tell me that I’m intelligent, I know that by touching the edge of a counter isn’t going to be able to stop something awful happening, that checking a switch something to a pattern of 4, or 4 x 4, or 4 x 4 x 4, or 4 x 4 x 4 x 4 isn’t going to make it anymore safer than doing it once, that if a tag is pointing outwards rather than inwards it isn’t going to mean someone is safe, that I don’t have special powers that mean my thoughts or behaviours can make or prevent something from happening… The thing is, most of the time I know that they are right, but all of the time I know that they might not be right. I know that my pillow being faced a particular way isn’t going to ensure safety because it doesn’t make sense that it would, but what if it might? What if?

My therapist once told me that she had been at a training course on OCD and the tutor had given them all a sheet of paper and a pen. He then asked them to write the name of someone they loved onto that sheet of paper, followed by ‘has been in a car accident’. A couple of people did it without a second thought, but the majority of people in that room said that they weren’t going to take part. The tutor pushed them for a bit but they still refused and so he asked them why they weren’t willing to join in, their responses were things like, ‘because it isn’t worth the risk’ or ‘I’m not willing to tempt fate’ etc. He told them that every time they ask people to ignore their OCD, they are asking them to tempt fate, take a risk and feel that anxiety of doing, or not doing, something which they truly believe can prevent something awful occurring.

Knowing something and being able to see the rational angle doesn’t mean you don’t question it or fear the what ifs, buts or maybes. I DO understand why people tell me that what I think is irrational, but I also know that when it comes down to it, the fear of something awful occurring because I haven’t undone or balanced out a thought is overwhelming; I’d be responsible. OCD isn’t about liking things to be neat, it isn’t about liking things to be clean and it isn’t about being a ‘little bit OCD’ because you use hand sanitizer before you eat a sandwich. It isn’t going on an entertainment show to clean someone’s house, it isn’t about enjoyment, it isn’t a little quirk or a desirable personality trait. OCD shuts down your life, closes many doors of opportunities, terrorises your mind, invades your dreams and takes hours of your time. It’s about intense fear, constant doubt, broken and bleeding skin from washing your hands, responsibility and guilt, obsessions and compulsions that rule your day to day life; it’s a hell that no one would desire. You can be obsessive, you can be a neat freak, you can be organised, you can be particular, you can be hygienic and you can be a clean freak without having OCD. I like things that are tidy, but my OCD can often mean things are quite cluttered, clean but cluttered. I like things to be done, but sometimes knowing that something is going to take me several hours longer than the average person to complete means I put it off, it builds up, I feel even more dread and it’s a cycle. OCD isn’t rational and it isn’t ever going to make sense because it is very topsy turvy and what bothers one will not bother another, even with one person things can differ dramatically.

Animals are so important to me, but many people will say ‘but you’ve got OCD?!’ when they find out I have had animals since I was tiny. I have a dog and he enjoys eating things I’d rather he didn’t, rolling in cow pat, sheep poop, fox poop, horse poop, well any kind of poop really, he likes the odd munch on horse poop, he likes to find muddy areas and ensure he brings enough mud and moss back from a walk to keep me busy for several hours. He needs the odd shower, he needs his poop picking up, he needs to be fed, he needs to be loved and he sits with me when I eat, he sleeps with me on or in my bed, he likes to sit on me or lie on me if he’s chilly and he spends a lot of time shoving his beard in my face. Some things I find very hard to deal with and I do sometimes panic and have to call on someone for help. I accept that I probably shower him when other people might have left him, but I also understand that dogs aren’t supposed to be showered too much and I don’t want to cause problems with his skin so I keep it in check. I know that some things people might think are okay, may not be okay with me – but then I also know that many things that don’t bother me, do bother others! I’m not as relaxed with other peoples animals, but I’m still happy to be around them and I’m not bothered about them sitting on me or licking me – as long as I can get clean!! However, touching a door handle can cause major issues and have me freaking out for ages after the event! It isn’t rational. I can eat in some places, I can’t in others. I can be okay with something one day, but I might not be okay with in another, or in a different situation, setting or time of day.

I know my OCD doesn’t make sense, I think most people would say the same, but in the moment it does make sense and the level of danger, risk, fear and threat is always very real. There’s an awful lot that I haven’t included in this because I have learnt that people don’t understand and whilst I know that people speaking up and education are the things that will make a difference; what I have written here is enough. It’s mostly lighter things, the things I’m less embarrassed about, the things I know are quite ‘normal’ and widespread amongst people with OCD.

The media puts out this message that OCD is a quirk, it’s a helpful tool, it’s great to have OCD because you will have a tidy house, that it’s really a blessing and is quite enjoyable – and the media is so wrong. It is none of those things. It is not the same as any of those things. ‘A little bit OCD’ doesn’t exist, OCD is an illness that destroys peoples lives – ‘a little bit OCD’ is having some slight obsessive and/or compulsive traits. OCD is fear, ‘a little bit OCD’ is liking things to be a certain way because they look nice. There is so much stigma surrounding mental health, please don’t contribute to that by minimising a massively complex illness that tortures so many into a slight quirk or desirable personality trait. Maybe with less judgement, brushing things under the carpet, silly comments and more understanding, a willingness to accept that OCD isn’t a funny thing to joke about; more people will feel able to speak their truth, the average and the not so average, rather than feeling the need to tell only part of their truth, the nicer and easier part of their truth, ensuring the rest remains hidden.

www.ocduk.org

(Image author unknown – willing to add credit.)

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OCD? – Don’t expect a tidy room!