The reality of OCD

OCD isn't what a lot of people think it is... When OCD is mentioned, some people think it's all about being neat, tidy, liking things clean and in order. Whilst some of these things can be compulsions that people with OCD have, it is so much more than that, and seeing it as 'just being neat' undermines the serious struggles that people with OCD face.


OCD stands for Obsessive Compulsive Disorder, it is said to be an anxiety disorder where people experience obsessions which can include intrusive thoughts, doubts, fears, concerns, worries, images etc that enter the mind without control and cause immense distress. Intrusive thoughts can include many things, and it's different for everyone. Intrusive thoughts usually play on your fears and what you are most against (unlike mental tics which are random) and this is why they are so upsetting and anxiety provoking to have. They can include images of violently hurting animals, images of harming yourself, despicable phrases, threats entering the mind, unwanted sexual content, not trusting what you have just seen or heard, 'opposite thinking' - where you look at something and involuntarily think the opposite of what you want to think, doubting your character, images of loved ones dying, fears of someone getting ill and so on. As you can imagine, having intrusive thoughts and obsessions can be terrifying, sometimes when you have an intrusive thought, you don't know that it's not your own thought and you panic, thinking that this may be part of who you really are, or it may feel like you are sharing your mind with a bully that just wants to threaten and haunt you.


OCD can be completely debilitating and disabling, some people's rituals take the majority of the day. They can take 4 hours, 6 hours, 8 hours, 10 hours and so on. People may lose the ability to do things such as dress themselves as their rituals are so complex, some people may procrastinate things as they cannot bear to do things when they know that if they start a task or a daily chore, they are going to be forced to acquiesce to the monster in their mind and do a plethora of different compulsions, it is exhausting.


OCD doesn't really use logic, you can check that you signed out of your computer, and then when you walk out of the room and have the urge to check again. You know you just did, but you just have to do it again and again to be absolutely sure. For some fears, we know it's unlikely that we will be responsible for the end of the world or for a loved one getting ill, but there is a chance, and that chance terrifies us, even though realistically we know it is miniscule, but it seems more serious to us, sometimes we can feel as if we are in a life or death situation for something that others could very easily brush off, but we can't.


The more you try to get rid of these thoughts, the worse they become, OCD tries to torture you and show you what you most fear or hate, over and over again. We may feel like our thoughts will become reality if we don't do anything about it, and sometimes it is very convincing - we can still tell you that we know it sounds silly, but at the same time, to us it seems possible.


Some people's OCD may cause avoidance of certain things, and this may be extreme. Some people may be so utterly terrified of the risk of getting ill or being contaminated by something that they feel as if they cannot touch anything, go anywhere or even breathe in certain places. Some people may have hand washing compulsions that take ages, their hands may become red and raw, some people may take repeated baths every day or disinfect everything.


Sometimes having OCD can make it difficult for people to get out of bed, living in a state of fear and uncertainty and being exhausted from these constant rituals and thoughts bombarding your psyche.


Some people may struggle to have any hope, it's hard to see an end to this hell at times, you just have to keep going and hope that things improve (they can). Many people feel weak or like they have no willpower because they can't seem to stop themselves from performing their compulsions, it's hard, it's not easy to stop and it is important for people to know this so that we can be met with compassion when we have our rituals. Recovery takes time, I want you to know that it's not your fault if you are struggling, you are trying your best and you are so, so strong for being able to get through the day with all of these struggles, and you are an absolute warrior for even facing the day when when life is so hard for you at this time, just keep going forwards. You are loved and I am proud of you. We don't want to be doing this, but we are petrified and it feels out of our control at times, improvement sometimes happens slowly, but it's worth it.


Imagine how difficult it is to face your worst fears head on, this is what many people with OCD do on a daily basis. People with OCD are incredible.


People can have both overt and covert compulsions. Overt compulsions are ones that are physical and can be seen, such as checking the stove, opening and closing doors, flicking light switches on and off, not stepping on a certain area of the floor, tapping things, clicking things etc, whereas covert compulsions are mental ones which can be hidden (part of pure-O OCD). Mental compulsions can include rumination (in an attempt to figure something out and find certainty), affirming over the intrusive thought to try and neutralise it, trying to visualise something to stop something bad from happening, trying to erase or undo the thought, repeating a specific phrase in the mind, apologising or praying in the mind and more.


Some people with OCD may have associations, such as the colour red being 'bad' or liking certain numbers and fearing others, it can seem quite superstitious.


Some people with OCD struggle for years, not knowing that the intrusive thoughts are part of a manageable condition, leading people to believe that they are a bad person inside and some people live with intense feelings of guilt and shame for years on end before opening up. This is why it's important to have the awareness of what OCD really is, so that people know that this isn't them and that there are others going through the same thing, that it's not their fault and help is available.


If someone opens up to you about intrusive thoughts, please try not to act shocked or appalled, please be calm and understanding, we don't want to be having these thoughts and they are not part of who we really are. Reacting with shock and horror if we open up is likely to make things worse.


There are different types of OCD depending on what it is fixated on. The types I have mainly experienced are Tourettic OCD and Morality / Scrupulosity OCD as well as Pure - O. My OCD is caused by PANDAS / PANS, which is an autoimmune disorder where the immune system attacks part of the brain, causing severe OCD, tics, handwriting deterioration, rages, urinary symptoms, sleep disturbances, loss of coordination, regression, ADHD traits, anxiety, depression, psychosis, food restriction /anorexia/ARFID, decline in math ability and more. People have a different variety of symptoms.


Tourettic OCD is tic related OCD, where individuals do not experience fears or intrusive thoughts as being linked to their rituals. People with Tourettic OCD often have rituals preceded by a physical sensation rather than anxiety, doubts or thoughts. People with Tourettic OCD don't worry that something bad may happen if they don't do the ritual, we just can't help it. My Tourettic OCD rituals where mainly preceded by out of body sensations, termed phantom tics, where I would feel as if I was being pulled by an elastic band to do the ritual, and I would feel the sensation on doors, objects, clothes, tables and other things, I could sense it from the other side of the room and sometimes it would form some sort of invisible barrier or would seem to float about in the air. Cognitive Behavioural therapy is usually ineffective for Tourettic OCD as it isn't thought based and ERP can make it worse due to suppression. Scrupulosity / Morality OCD is mainly related to religion, spirituality or 'doing the right thing' and having a fear of sinning and obsessively following a religious or spiritual practice, I hope to write a blog post about my experiences of this type of OCD in the future.


I hope that this post can give you an understanding of Obsessive Compulsive Disorder and help you feel less alone if you are struggling with it.