Elle May discusses OCD in 3 parts: what it is, her experience and how to manage it.

“I do not have OCD. I checked, three or four hundred times, and I definitely don’t have it”– David Mitchell

Hello! To anyone reading this who knows or thinks that they have OCD, and who is having a fucking shit time right now, I can say one thing for certain: you can manage this.
I know you can because I was you once and now I’m here – I’m managing my OCD and it’s wrapped around my little finger – not the other way around!!

Remember, however much you think you do, I can tell you for sure that you do not deserve this and you can manage this.

This Article is comprised of three parts:

1. What is OCD
2. My lived experience of Responsibility OCD
3. How to start working towards Managing your OCD

What is OCD?

I’ve heard lots of people say “I’m really OCD about that”

This is not surprising. It’s in our nature to feel anxiety, it’s a survival instinct. We needed it for when we were being chased by walruses (or whatever happen pre-1900). The thing is, we’re not being chased by walruses anymore. We no longer need anxiety as a signal to run away from predators. Our modern day lives don’t require anxiety in the same way – so it’s just kind of there, kicking about in our stomachs and fingertips and pretty much any other place. And this bothers us. Why? Because anxiety feels uncomfortable, it feels bad. When we feel it, we usually have a flight, fight or fright response and we want to GET RID OF IT. How do we do this? By regaining control.

And so, many people have OCD traits – maybe you double check that you locked the front door, or the pens on your desk have to be in a certain order, or if you see a yellow car you have to say ‘yellow car’ (shout-out to my little sister). This makes you feel safe, feel in control. This is common, but this does not mean that you have OCD.

OCD is characterised by two distinct components: Obsessions and Compulsions.

If you have OCD you will probably have a number of different Obsessions and Compulsions and the following is only a guide and not a definitive list as they are very personal to you!

Obsessions can take many forms. Usually, they are persistent and uncontrollable thoughts, impulses, images, fears, doubts and/or a general feeling of something being wrong. I generally think of mine as ‘Intrusive Thoughts’ i.e thoughts that come into my head which I cannot control.

Note: Most people (i.e people who do not have OCD) will have Intrusive Thoughts, but remember that OCD involves not only the Intrusive Thoughts (a type of Obsession), but the Compulsions too.

Obsessions feel uncomfortable, so to off-set them, a person with OCD will carry out a Compulsion. Compulsions can take many forms, the most common are: checking (e.g checking something is in a certain position numerous times), a repetitive action (e.g turning the light switch on and off three times), seeking reassurance from another person, avoidance (avoiding people, places, objects, foods or anything else which you fear may trigger your OCD) and staying still/freezing (instead of making a decision). Another Compulsion (which was my main Compulsion) was the act of not doing the thing I wanted or needed to do. For example, if I had the Intrusive Thought that trying on a certain item of clothing would cause something bad to happen, I would simply not try the item of clothing on (as opposed to doing an outward Compulsion like touching the wall three times). Another type of Compulsion is Pure-O Compulsions which take place only in the mind and so are unseen rituals e.g counting.

So OCD is not merely liking things to be neat, tidy and organised.
When I tell people about OCD, they are usually surprised that it doesn’t just mean compulsive cleaning or hand washing. These two Compulsions (in both cases, the act of cleaning/washing) are an attempt to off-set the anxiety the person feels as a result of their Obsession. This Obsession could simply be that it feels wrong if their hands are not clean, or it could be a more specific Intrusive Thought such as ‘If I do not wash my hands 5 times, my dog will die tonight’ (which is linked to Responsibility OCD, mentioned below). Or the Obsession could be something like a fear of infection or fear of embarrassment if someone comes over and your home is not clean.  Both of these fall under the category of ‘Contamination OCD’.

Obsessive hand washing was the first Compulsion I carried out and this was when I was a very little girl. I felt anxious and had Obsessions about lots of things, and I used obsessive hand washing as a way to attempt to offset that anxiety by feeling that I had control i.e if I washed my hands 5 times, I felt like the bad things I was afraid of would not happen.
Looking back now over the years that I have struggled with OCD, I feel sad that I have wasted so much energy and time on these pointless and meaningless Compulsions. At the time of course, the idea of not doing them was out of the question.

Here is Isabel Kilbourn’s artistic representation of Compulsive Hand Washing:

While this is the most known-about form of OCD, there are many other types, and often people with OCD will find that they have a combination, or that their OCD Obsessions will change from one to another e.g from Contamination OCD to Responsibility OCD.

Please note: OCD Obsessions and Compulsions are very personal and very specific to you – we are all individuals and so our OCD will manifest in an infinite number of different ways. The following is just a rough guide to some types of Obsessions and Compulsions, but it is by no means a full list!

Some common types of OCD:

• Responsibility OCD: Where you have Intrusive Thoughts about your actions leading to others being harmed e.g you have the Intrusive Thought ‘If I eat that piece of toast, my Auntie will get sick’. This makes you feel anxious and so you carry out a Compulsion: i.e not eating the toast.
• Sexual OCD: Where you have Intrusive, often upsetting and disturbing thoughts or images related to sex. Sufferers of this often find it hard to tell anyone because they are often sickened by their own thoughts. However, that is all they are – thoughts – you are not a bad person, you are just someone who has OCD.
• Magical Thinking Intrusive Thoughts – This is the fear that even thinking about something bad will make it more likely to happen.
• Religious Intrusive Thoughts – OCD often hits you where it hurts the most – it will seek out your areas of vulnerability and will attack you there. Therefore, religion, an area of great importance and sensitivity to some people, is a prime candidate for OCD Obsessions. Sometimes referred to as scrupulosity, religious Intrusive Thoughts might include things such as the thought: ‘my sins will never be forgiven by God and I will go to hell’ or, linking in with Responsibility OCD, a sufferer might fear that their actions will cause a family member or loved one to go to hell. One example of a Compulsion is repeating certain prayers over and over again.
  Again, OCD is very personal to the person who has it and there is an infinite number of possible religion-related Obsessions and Compulsions. I have had experience of this kind of OCD and can’t stress enough to anyone experiencing this that however frightened you may feel, you are not a bad person and you do not deserve this – religion should bring you peace, not this painful experience.
• Violent Intrusive Thoughts – the OCD UK website explains that violent Intrusive Thoughts are: “obsessive fears of carrying out violent acts against loved ones or other people. Intrusive Thoughts include: thoughts about accidentally touching someone inappropriately, with the aim of hurting them. Most sufferers with these types of fears often end up labelling themselves as a bad person, simply for having the thoughts.  They falsely believe that having the thoughts mean they are capable of acting upon them. The constant analysing and questioning of these disturbing aspects of OCD becomes incredibly upsetting and because of the nature of the thoughts many sufferers are reluctant to open up to health professionals to seek help, fearing they may be labelled.” Ultimately, you are not a bad person, you are just having Intrusive Thoughts – you deserve to be listened to, understood and helped!

In all the cases above, it must be stressed that Intrusive Thoughts are just thoughts.

They are not voluntarily produced and neither are they fantasies or impulses which will be acted upon.

For more information on OCD and its sub-types, have a look here at the OCDUK Website: http://www.ocduk.org/types-ocd

So, OCD is composed of experiencing Obsessions, which cause the person with OCD to carry out Compulsions.

It is important to note that the intensity to which OCD affects you spans across a broad spectrum – for some people it will be very intense and will truly impact upon their daily lives, whereas for others, their Obsessions and Compulsions may not bother them very much at all.

Now I will explain what having Responsibility OCD was like for me…

‘Anxiety is neither good nor bad. It is merely an uncomfortable feeling’– Russ Harris, ‘The Happiness Trap’

This simple statement is something that really changed things for me, because it really is that simple.

Even though over my twenty years of life, my OCD Obsessions and Compulsions layered up into what seemed like an inescapable tapestry – into which I was woven – that was composed of my memories, my present, my rituals, my fears, my lifestyle, my everything – I have finally been able to untie myself almost completely because I accept that I am anxious.

Once I accepted this, my life became a whole lot easier.

I didn’t vocalise what was going on inside my head for years because I didn’t know what it was and I thought that people would think I was crazy if I told them that I didn’t buy the shoes I really liked because I told myself that my mum would die if I did.

It turns out that that was just an Intrusive Thought, and me not buying the shoes was my Compulsion. It’s just OCD. Specifically, Responsibility OCD.

My OCD was at a level where it took a round of Cognitive Behavioural Therapy (CBT) in Year 11 and a round of Rational Emotive Behavioural Therapy (REBT) more recently to get me to where I am now – management of my OCD. And that includes not being afraid of it anymore. Not being afraid of feeling anxious anymore.

I feel powerful when I say out-loud to myself ‘I feel anxious and it’s uncomfortable’ because I remind myself that that is its only power – a feeling of discomfort. If I accept that I feel it and stop wasting time by trying to stop feeling it, then I can carry on with my day.

Before this, Responsibility OCD was at times a dominant feature of my life. I will try to explain how it affected my day-to-day life because even though this feels incredibly personal, I really believe that it is vital to raise awareness and I hate to think of people suffering in silence like I did.

Even though I had minimal Obsessions and Compulsions as a child, OCD really began to manifest itself into my daily life in Year 11. What I call an ‘OCD moment’ would go something like this: It’s lunchtime and I need to buy a sandwich. I’m feeling anxious, just because I am, I am human. I go to the counter, and I start having Intrusive Thoughts like ‘If you eat the tuna bagel then your mum will die tomorrow’. Now, everyone has Intrusive Thoughts. But for someone who doesn’t have OCD, they might acknowledge that thought as weird, they might ignore the thought or they might not even recognise it; whichever way, the crucial part is that it doesn’t affect them or their decision. But for me, as someone with OCD and specifically, Responsibility OCD, I start to feel really really anxious at this point.
So I wouldn’t eat the tuna sandwich.

Now, if that was the only impact that my OCD had on my day then I could get over it.  But OCD doesn’t work like that, it just keeps on slamming you down. So, there I am, and I can’t pick any sandwich. Cheese means my nana will get injured tomorrow, chicken salad means I will die, pasta salads are out of the question too because maybe my aunt will get a disease. Anxiety, anxiety, anxiety. Fear that I’m going to harm the people I love by eating those sandwiches. Rationally I know that this is not possible, but OCD plays on your sensitivity, I start to ask myself – how could I be so selfish as to think that my hunger is more important that their lives and wellbeing? What if those bad things did happen? And it was my fault?

From here it started to influence all aspects of my day – I stopped speaking at times and giving opinions because it felt “wrong” to do so. I couldn’t fully write things out on paper, I would have to go back and check I had locked my locker 5, 6, 7 times. I remember walking back and forth one day to it on the history corridor and bursting into tears because I was just SO FRUSTRATED that I was making myself check, check, check. It was boring it was tiring it was totally irrational and it was making me feel like I was losing control. And this is the big irony of OCD. It is a means to attempt to gain a feeling of control back, but it left me feeling like I had none.
And it spirals from there.

Luckily for me, a round of CBT (Cognitive Behavioural Therapy), after eventually breaking down and telling my mum what was going on inside my head, helped me to understand my OCD and actually led to me having only very minimal Obsessions and Compulsions. But OCD is still a life-spanning and incurable condition. This sounds scary at first but for me it is actually quite comforting; having originally thought that I was ‘cured’ of OCD after this CBT therapy in Year 11 meant that I did not work on any kind of long-term OCD management. This is I think why my Responsibility OCD came back with such power while at university.

Now that I think of my relationship with OCD as one of management, I have a more realistic expectation of myself and my OCD and I no longer feel bad when it occasionally creeps back in. When it does, that is not a failing rather, it is just an indicator that I need to focus on my management a bit more. Management for me has been so successful that most days I now have no Intrusive Thoughts or if I do, they cause me minimal anxiety and I do not carry out any Compulsion. This is why I strongly support CBT and REBT (explained below) therapies for OCD.

I started having intense Responsibility OCD Obsessions at university during revision time one year – not surprising as this is a time of increased stress. Memories of those two months include things like not being able to get dressed because each item of clothing represented a different person getting harmed in some way, forcing myself to read every character in a paper, not moving for 3 hours and not allowing myself to attend events that I wanted to. I remember grating a carrot one day but then telling myself I couldn’t eat it as a really bad thing would happen, and then collapsing into tears on the floor. I didn’t recognise myself – I like to cry sometimes as a healing experience but at that time I was on the verge of tears constantly. I was no longer independent, I couldn’t even choose a tv programme on BBC iplayer – every day brought the challenge of decisions. Things most people wouldn’t even think of dominated my day: where to place my feet, which part of the door handle to touch, whether I was “allowed” to shower? how I should be lying in bed, how many steps to take to the bathroom, whether to touch a towel or not, where to place my feet, what to eat for breakfast? ‘I can’t have this as X will happen, or that as Y might happen’.

My Obsession was usually that something bad would happen to someone I loved, and my Compulsion often manifested itself as not doing something e.g not placing my foot on a certain part of the carpet. However, it started to get to a point where everything felt “wrong” and so finally moving my foot felt like the worst possible thing I could do, a catastrophic move. I still felt anxious, but now I also felt guilt and dread and regret. Because I moved my foot.

Ridiculous I know – but that is the power of OCD. Specifically in this case, Responsibility OCD.

It took me a long time to learn and to accept that … I have no control! I can’t make things happen or not happen to people by wearing a certain skirt.
And even thought I rationally always knew this, anxiety and OCD play on your ability to be irrational. Your ability to think ‘What if..?’

To anyone who has never experienced OCD, this must all sound pretty wild. The best way I can think to explain it is to say that having OCD for me was like having a pane of glass in front of me all the time. Obviously if I wanted to drink the cup of tea in front of me, I could. But responsibility OCD was like a pane of glass stopping me from doing that action because I feared that something bad would happen if I did. So even thought to anyone else in the room, they would be thinking ‘Elle just drink the tea!’, to me it was like an invisible force – essentially, fear, anxiety and an Intrusive Thought – that, like a pane of glass, were stopping me from drinking the tea.
This is just my own personal experience, and other people will experience OCD in completely different ways.

Nowadays, even if I have an Intrusive Thought, I drink the tea. Why? Because I need to live my life! Despite what my Intrusive Thought says about consequences, I know that I simply do NOT have that level of control. Me drinking tea cannot and will not hurt someone else even if my Intrusive Thought says that it will. Sometimes drinking the tea might be terrifying, but it must be done to start to break down that OCD cycle – it’s all about those small victories. Those times that you refuse to carry out those Compulsions, those times that you DO drink the tea because you can say (as my mum likes to remind me to shout out), ‘Fuck Off OCD!’

This is easier said than done, but with the help of accessing reading materials (such as on OCD UK) as well as CBT therapy, REBT therapy and some tips below, I have genuinely been able to start living a life where my OCD, while there, just doesn’t bother me.

A few things I have learnt from Therapy that I would like to share and which you should apply to YOU!

• I do not have some kind of magic control, I am only responsible for me
• I am only responsible for me because the only things I can control in my life are my responses – and even these I cannot perfectly control
• I cannot control my thoughts or what comes into my head, but I can choose how I respond to those thoughts. I choose not to believe or listen to my Intrusive Thoughts. They are just thoughts, they have no power.
• Even ‘if’ my actions could create those negative effects for the people I loved, I still need to live my life. They are just thoughts and so cannot possibly have those negative effects.
• I am valuable simply because I exist
• I accept that I have OCD

Management

I am not a psychologist, but these are my suggestions for starting to think about managing your OCD. I will stress that I genuinely believe I am only able to manage mine so well now because my OCD was at such a level during that time that I really did need counselling. This might not be necessary for everyone, but please consider it!

1. Student Health Service

For a really long time, I didn’t want help with my OCD. I thought that I was fine, I didn’t want to waste anyone’s time and I was nervous about sharing intimate details about my mind with someone else. However, I can honestly say that however nervous I was beforehand, there was nothing more comforting to me than sitting in a little room across from a professional and realising this person can help me. OCD is obviously diagnosable, and while it is a life-spanning condition that can’t be ‘cured’, it is completely treatable through many methods, such as CBT (Cognitive Behavioural Therapy). As the OCD UK Website states, ‘recovery is possible’ ! If OCD is affecting your life day-to-day and you’re tired of it inhibiting you, I would strongly suggest booking an appointment to see a GP at the Student Health Service (Hampton House) (booking information here:  http://www.bristol.ac.uk/students-health/appointments/ ) A GP can help refer you to other services such as the Student Counselling Service.

There is also a daily drop-in service at the Student Counselling Service in Hampton House, information can be found here: http://www.bristol.ac.uk/student-counselling/services-offered/supported-self-help-drop-ins/

I was personally not treated at the University Student Health Service because both of my therapies happened outside of the University term, however, I know that the Student health Service does offer counselling and resources (such a leaflets) that are specific to OCD.

CBT and REBT are I think the best channels through which to learn about OCD Management as they both teach you coping techniques

2. Vocalise your OCD Obsessions and Compulsions to yourself. Outloud.

For example, say to yourself, ‘I am (your name) and I am standing in a room and I am having the Intrusive Thought that if I don’t touch the mirror twice then my mum will die’. Or, ‘I am a boy, standing in the kitchen and I am doing the Compulsion of turning the light switch off and on four times’

This is simple but effective – even if you can’t help but carry out the Compulsion (and don’t be hard on yourself!) just vocalising what is going on can be really grounding. Reminding yourself that that you’re having an OCD moment and that your anxiety, Obsession and Compulsion are OCD and not you just being weird, can be really calming.  I find that it can bring me outside of my head and back to the reality of the situation.

3. Self-care – For me, getting in touch with my body and looking after myself has been a really important part of being effective at managing my OCD. I would suggest things such as:

• Try to get in a few early bedtimes during the week (going to bed at 8pm, 9pm or 10pm)
• Remember to eat a balanced diet and try to eat at regular times each day
• Take time to assess how you’re feeling – whether this is 10 minutes sat on your bedroom floor in the morning, or during your walk to Uni, assess your body, how you’re feeling, touch your tummy and centre yourself. If you’re feeling anxious that day, or you’re having Obsessions and Compulsions, remind yourself that this is ok – these are just feelings and thoughts and nothing more.
• Positive affirmations – it might sound silly but it feels great. Either look in the mirror, or do it in your head or say it out-loud, wherever you are, remind yourself that you are doing great, remind yourself that ‘you are strong’ ‘you are doing fine’ ‘you just had an OCD moment and you panicked, that’s ok, you’re doing great’
• Give yourself a break – be kind to yourself, try not to put too much pressure on yourself, remember that you are a fallible human being and are not and cannot be perfect. And that’s ok!

4. STOP DRINKING CAFFEINE!

• This has actually made a huge difference to my day-to-day relationship with my OCD. Caffeine is not a good idea if you have anxiety or OCD. Switch to de-caff coffee or de-caff breakfast tea (even earl grey comes in de-caff if you’re feeling fancy) (most berry teas etc are naturally caffeine free) and see if you get any results, however small.

5. Forgive yourself

A lot of OCD includes feelings of guilt and regret. You have to work on loving and forgiving yourself. Two techniques I like to use are:

1. Imagine that you are your own parent. So, imagine that you have a child (also you) who comes to you and tells you about their OCD. What they say is what you are actually experiencing right now as you. What would you tell them? This is essentially an exercise in being your own loving parent – think about the love, advice and sensitivity that you would treat that child with, and apply it back to yourself.
2. Write yourself a letter of forgiveness – the thing about OCD is that even though Intrusive Thoughts are horrible, they are just thoughts, so you haven’t actually done anything. However, you may feel guilty or worried about your thoughts or other aspects of your OCD and so writing yourself a letter of forgiveness can be a healing experience.

6. Speak openly

• Try to find a safe space e.g a person or people, who you feel you can talk to about your OCD. This can be one of the hardest things to do, but hopefully now you have read this you can see that OCD can be explained. It’s important to share how you are feeling, especially as Obsessions are all in your mind and so can be very isolating – sometimes you do just need a hug or a reality check from someone else.

7. Try to find some humour in it. Believe me, OCD was not funny for a long time, but now I do see the funny side. Having OCD means that you are probably a very creative and empathic person, and also that you have a sense of humour. Laugh at yourself if you can. I especially like the singer-songwriter Emilie Autumn’s quote: ‘I do not have OCD OCD OCD’ – it makes me laugh every-time.

Some further resources:

• OCD UK is an excellent website which offers lots of information about OCD and is also an excellent organisation: http://www.ocduk.org/
• AnxietyBC is another helpful website: https://www.anxietybc.com/
• ‘The happiness trap’ by Russ Harris is not directly about OCD but is a book that helped me a lot. He is a world-renowned trainer of Acceptance & Commitment Therapy (ACT).

He also makes fun youtube videos about ACT, some of which are these:

• https://www.youtube.com/watch?v=dz_nexLqY_8 
• https://www.youtube.com/watch?v=93LFNtcR1Ok

Lastly, I would like to say that you should remember that you are not a victim, even though it may feel like it sometimes.

You are not a victim because you can manage this, you might just need a bit of help.

Lots of love, Elle X x x

Images by Jess Baxter and Isabel Kilbourn