"You Don't Have OCD, Your Room is a Mess"

It took twenty-three years for me to be diagnosed as OCD.

I have had OCD since I was a young child.

Twenty years to diagnose OCD is not good enough.

Okay, so, I guess I should explain what OCD is. I mean, I'm sure you've heard of it. Obsessive-Compulsive Disorder. You've heard of Obsessive-Compulsive cleaners, that show on Channel 4 that did more harm than good? You've seen the neurotic behaviour displayed amongst characters on-screen: Sheldon Cooper in Big Bang Theory, Emma Pillsbury in Glee... but OCD is not always like that. In fact, it's very rarely like that.

OCD, like any mental condition, is unique to the person it affects. Of course some people who are diagnosed with OCD may be the 'textbook' case. They may show signs of germophobia, obsessive cleaning, flicking light-switches on and off six times, and organising pencils into straight lines. Of course they might. But not everyone does that. I think that's why it took so long for me to be diagnosed as OCD.

OCD does not always have to be obsessive cleaning or compulsive behaviour. Yes, that is what the name suggests, but it is SO MUCH more than that.

I'll start at the beginning.

When I was three years old I brought my mother a carving knife that I had found on the floor in the kitchen. One of our three cats must have knocked it off the kitchen surface or the drying rack. Our house wasn't big, I didn't have to carry it far to my mother in the living room. She, of course, panicked... but I was a careful child. I carried it as though it was made of glass, gingerly. I knew in my tiny mind that it was dangerous, and something that must have been fear was telling me to carry it a certain way. Mum took it from me and made sure from then on that the knives were locked away, but it didn't matter. I would never run around with it. I was too careful for that.

When I was four years old my Rainbow girlguiding troop took a little trip to the fire station for a fire safety lesson. Harmless, right? Wrong. Not for me. The kindly fireman told all of us kiddies about the common causes of house fires: the oven being left on, or plugs, or an overheating wire. Little did they know that this harmless education would have a lasting and frankly horrible effect on my young mind. That night after this fire station trip I gathered my favourite things into a pillowcase: my favourite book, my cuddly fox, my baby blanket, and sensible things like a change of clothes. I kept this pillowcase by my bed in case of a house fire, for easy access. That night marked the first night of many, many nights when I would have to make sure that the oven was switched off at bedtime, all the plugs in the house were in the off position and there were no loose wires that the cats could manipulate. For about three years I checked these things every night before sleeping: three years. It was an obsession, the first of many, in response to a very real fear. My grandmother had recently passed away, though, and neurotic behaviour in children is quite common when they are experiencing grief. This is what it was put down to.

When I was five years old I would get paranoid that I wouldn't be able to go to the bathroom when I needed it. I only have one grown kidney, and so this was a fear from the age of two when the other stopped growing and affected my bladder, but now that I had started school properly the fear grew. We had to ask to go to the toilet, and I was too afraid to do that. My teacher was lovely when she wanted to be, but good golly she was strict. The obsession with not being able to go to the toilet on time physically gave me urine-tract infections from holding in my bladder all day long. It was an obsession that became a compulsion, yet once again it was put down to something else: this time being I had just started school, perhaps it was nerves.

When I was six years old I had the best birthday party ever. My dad took the doors off all over the house and put them on car jacks to make a banquet table for my medieval clad friends. We travelled an hour and a half to Sherwood forest to get me a Maid Marian costume. We made a beautiful castle cake for all my school friends and friends from around the village. It was the best party ever, and it meant that I wanted all of my birthdays to be like that. From then on I would plan and plan my birthday parties months in advance. None of them ever came to fruition because my plans were never good enough and so I would panic and we would end up just going to the cinema.

When I was seven years old I began to draw 'patterns'. I would draw these patterns with my fingertips all the time: on my leg, on the wall, on the arm of the sofa, on the cat's back. It wasn't particularly at a time of stress either, it would just be a comfort to be doing so. I had done it for months before my parents noticed. I'm not sure if they were concerned as such, but I remember hiding it from then on.

When I was eight years old my baby brother was born, and he became my obsession. I needed to make sure at all times that he was happy, that he was content. I became like a guard dog to him. Nothing would happen to him under my watch. This is probably a benefit of OCD, the protective element.

For the next fifteen years of my life the various obsessive compulsive behaviours that I displayed were simply put down to me being a 'perfectionist'. I did really well at sixth form and through my apprenticeship because I was so organised. I would always be on time, would never be late and would often be very, very early out of fear of being late. During group projects I knew exactly what was happening and when things should be done. It made me a very good admin assistant in my part-time job and my colleagues at sixth form certainly benefitted. I liked to know I was following the rules and so, for instance, my indication skill whilst driving was always perfect: even when nobody was around I would indicate on the back roads in the dead countryside that I lived in.

I was a little neurotic in relationships, too, and this is something I still do unfortunately, though I do try. I wouldn't say controlling or manipulative, I never let it go that far, but I do like to know that my partner is alive... so I will ask for confirmation that they made it home after work for reassurance. My current partner is an absolute saint with this, he doesn't argue because he knows why I need to know (I admit I can be very annoying when he forgets to tell me, and I'm sorry, and I love you!). My teenage and early adult relationships: not so much. And, if any of my exes read this, I am very sorry.

I was a stickler for routine and, I guess, control... yet nobody, I repeat: NOBODY: ever broached the term 'OCD' for the way that I was behaving.

It was only after I started university that the subject was finally brought up. During a routine doctors appointment the conversation somehow turned to my 'organisation' skills. I think it must have been because they asked me if I was stressed and I said "no, not really, only when things don't go according to plan". It was in that moment that the nurse practitioner to whom I was speaking (and I'm so gutted I cannot remember her name so that I could thank her!!) asked me if I had ever been tested for Obsessive-Compulsive Disorder. I was in denial at first: I have no compulsive routines really and I'm not scared of germs per say, the only time I get nervous about them (before the pandemic) is on sharing straws and other peoples fingers on cup rims. Oh, and as far as oral sex is concerned... but that's a whole other story (and frankly common sense!) Yet, the more this nurse practitioner explained the more the pieces fit.

I had OCD. There was no denying it, really.

And so here I am to break the stigma surrounding OCD as a condition in case you, like me, have waited twenty years for an answer as to why you behave the way you do.

I am not compulsive beyond indicating at every corner in my car and getting to places on time. My first lesson of my first attempt at a degree I got lost and was five minutes late and felt like crying. That degree didn't go very well from then on in for many reasons, but my OCD certainly played a part in that. There's a lot of trust in drama, but OCD by definition makes that hard to succeed. Anyway, I digress.

I am still obsessed with making sure my front door is locked and the oven is off, but that's just a safety thing and personally I think everyone should do that. I still have to check my boyfriend gets places safe when he's driving, and my parents when I'm away from them, and I worry about my friends if I don't hear from them. I previously mentioned my germ issues but there aren't many, and honestly having OCD in a pandemic is a superpower.

So, what makes me OCD if I'm not a germophobe and I'm not a stickler for 'neat and tidy'? Well, I'll tell you.

Anyone who walks into my bedroom often utters the phrase, "Are you sure you have OCD, this place is a bit of a mess" (in some shape or form). Yes, I am a bit of a hoarder, and yes my room CAN be a mess sometimes. Not like old pots and mouldy food messy, because EW, but more clothes on a chair rather than in the drawer and my desk covered in books. BUT, within that mess I know exactly where everything is, things from years back. I get very distressed if anyone moves anything of mine without asking, a trait often attributed to a control freak. THIS control freak says we should take back that term. There's nothing wrong with a bit of control.

Fun fact: People who have OCD are quite often hoarders. It's hard for us to let go of things 'in case we need them'. I don't hoard to the point of crisp packets and old newspapers, but I still have a loo roll elephant I made when I was four years old...

Just because I 'hoard' doesn't mean I'm not CLEAN, though. My room may look messy but it is clean, there is no mould or gunge. I refer to myself as a 'chaotic cleaner', and I'll explain that in a moment.

My DVDs are categorised alphabetically (because it just makes sense....) and my books alphabetically and then chronologically by order. I know exactly where something is when I need it. I have to know what I'm doing the next day, and if that something changes it can trigger a panic attack or a depressive episode. If my routine is changed it can be very problematic. And I don't like surprises. Surprises I am not in charge of, and that I cannot cope with. I hate it when someone doesn't finish a sentence, and if I decide I need to know something (like, for instance, how long an elephant gestation period is (22 months)) I can't rest until I have found out the answer. That is an obsession.

I now know when to recognise when I am getting an attack of OCD fuelled anxiety. As previously mentioned, I am a 'chaotic cleaner'. This means, essentially, that when I feel out of control of a situation I will clean or do the washing up or laundry because I can control that. SO, if I'm ever up to my elbows scrubbing the floor... maybe ask me what happened to trigger it?

I am writing this article not as a 'boo, poor little me' piece, but instead to raise awareness. I, thankfully, don't have OCD very bad. I don't have to do things for fear of something horrible happening, not often anyway. My OCD is manageable.

Don't be one of those people who assumes OCD is simply germophobia. Like every other mental illness, OCD is far more complex than that.

Take time to educate yourself or ask questions. Personally, I don't mind talking about my experience. In the UK 1.2% of the population has diagnosed OCD, but that means nothing. Many others, like me, may not have been diagnosed yet or at all. If you think any of what I've said above may also apply to you or anyone you know, I highly recommend you reach out to a doctor. If you're not happy with the first answer, go to another. I saw many, many doctors until the nurse practitioner finally gave me an explanation.

And please, PLEASE, don't be one of those people who explains their need to organise ONE thing with "It's just my OCD" followed by a giggle because you know it's not true. It's not funny, and it can be very harmful to the recognition of actual OCD behaviour. The 'OCD check' TikTok trend did not help this at all.

So, to close, I will leave you with some facts about OCD to help. Thank you for reading.

FACTS ABOUT OCD:

1 in 100 adults are believed to have OCD.

OCD often occurs in teenage years or early adult, and can be either heridatary or developed.

There are four recognised types of OCD: Contamination, Perfection, Doubt/Harm, and Forbidden Thoughts. (Mine is 'Perfection' OCD).

OCD can be linked with Misophonia, a condition that means certain repetitive sounds (such as chewing) can trigger the fight, flight or freeze response.

Dissociation can be a symptom, i.e. feeling out of control of your own body. This one is quite rare and can also be a symptom of a lot of other mental health conditions, so check it definitely IS OCD.

OCD-related conditions include hoarding disorder (HD) and body dysmorphic disorder (BDD) as well as hair-pulling disorder and skin-picking disorder.

About 70% of patients with OCD will benefit from either cognitive behavioral therapy (CBT) or medication. However, obstacles to getting effective treatment for OCD include: Hiding symptoms due to embarrassment and stigma; Lack of proper training in health professionals; Difficulty finding local therapists who can effectively treat OCD. If you think you need treatment: FIGHT FOR IT. My own therapist dismissed my OCD as not important enough to work on right now because I've been coping with it my whole life... I didn't fight but I wish I had.

Most importantly: mental conditions literally change the chemistry of your brain. You're not just being neurotic, your brain is literally fighting itself. Don't let anyone ever tell you to just get over it.

If you need help with OCD, or think you might have the condition, I highly recommend checking out MIND or OCD-UK.