OCD might not be what you think it is!

For more than two decades I thought that Obsessive Compulsive Disorder (OCD) was a cute and desirable personality quirk that meant I’d have a spotless room, a rainbow-coloured wardrobe, and a beautifully organised record collection which, would of course be alphabetised and dusted at all times. Not only that, I thought that if I had OCD, I’d enjoy doing all of this, that it would be fun and easy. For this reason, it never crossed my mind, that the mental torture I was experiencing, that twisted and turned to target everything I loved, would be even closely related to OCD.

How wrong I was. This is why I am here.

My ignorance of OCD, fed by the stereotype portrayed in the media and the ‘so OCD’ jokes I’d hear in general conversation, kept me in the dark for over two decades.

I want the world to know what ‘real’ OCD is so that people get to the diagnosis and help they need much sooner than I (and many others) did (and still do).

Let’s look at it step by step:

The cycle starts with an intrusive thought which leads to an obsession (repetitive intrusive thoughts).

Obsessions/intrusive thoughts are unwanted doubts and uncertainties. It’s important to note that the doubt by itself isn’t the problem. Everyone has doubt and everyone experiences unwanted thoughts from time to time. You know those thoughts that give you a bit of a shock? You didn’t ask for them, there’s no intention there, they just popped into your head, for example:

• What if I swerve my car into oncoming traffic, purposefully?

• What if I shouted an expletive out loud in public?

• An urge to push somebody over or punch them in the face.

• What if someone gets into the house and hurts my baby?

A person WITHOUT OCD would barely notice these thoughts and get on with their day.

OCD is a debilitating disorder that follows a repetitive cycle of obsessions, distress, compulsions and short-term relief.

I created this doodle because it’s what I wish I had been shown as soon as I was diagnosed. Learning about this cycle helped me understand what was going on in my mind and why I was behaving the way I was. More importantly, it helped me visualise HOW to break the cycle, move towards recovery and explain what I was experiencing to loved ones.

The problem is that a person with OCD struggles to say ‘Wow, that was a weird/messed-up thought’ and walk on (at least not easily or before treatment). Instead, a person with OCD takes one crucial step which turns the thought/doubt into an intolerable obsession, and that step is…. attaching meaning.

To a person with OCD, the thought now ‘means’ something, it feels threatening, it’s a whole lot scarier and to an OCD mind, needs addressing urgently! This makes a person with OCD feel distressed/anxious/disgusted.

‘What if I shouted an expletive out loud in public?’ goes from a fleeting intrusive thought to a distressing obsession… ‘What does that mean about me? Did I do it and I can’t remember? Do I want to do this? Why would I have this thought, if I didn’t want to do it? I must be a bad person. How can I be certain, that I won’t shout an expletive, out loud?’

It’s a doubt spiral that leads to the initial thought carrying weight and feeling IMPORTANT!

The next thing a person with OCD wants to do is to rid themselves of the thoughts, relieve the distress or make sure in their mind, that the thought can’t be realised.

That’s where compulsions come into play. Compulsions are any action, whether overt or covert, designed to reduce the distress felt by the person with OCD. Continuing with the expletive example, compulsions might include:

• physical movements such as covering the mouth when in public.

• invisible behaviours such as neutralising intrusive thoughts with ‘nicer’ or reassuring thoughts.

• asking for reassurance from a friend - ‘Did I say anything offensive out loud last night?’

• avoiding public places altogether.

  The final part of the cycle is short-term relief. Compulsions work for a short time, but when relief is felt, the brain registers that the compulsions are responsible for the relief (negative reinforcement).

  The next time that distressing intrusive thought pops up, the brain jumps to wanting that compulsion completing again, and again, and again, and again, and again until it gains the relief it desires (which is sometimes so brief you barely notice it!). The cycle repeats and repeats. In short, the compulsions provide short-term relief from the distress but ultimately feed the disorder long-term.

An example of the cycle at play.

Exposure and response prevention (ERP) is the NICE-recommended treatment for OCD (with SSRI medication). When I was undergoing treatment, it helped me to understand where ERP fits into the OCD cycle and how ERP could help me to break it.

ERP treatment is difficult and takes courage but it can chip away at the disorder over time. It involves ranking your obsessions by how many subjective units of distress (SUDs) they cause, before exposing to each obsession and wanting to tolerate the distress/anxiety/disgust without carrying out any compulsions.

Doubt

OCD is known as ‘the doubting disorder’ and in yonder year was referred to as ‘folie de doute’ which translates to the ‘madness of doubt’. Anyone with OCD will likely relate to this. The agony of facing persistent doubt/uncertainty and the constant and exhausting urge to seek (often elusive) answers/certainty.

Although people with OCD often relate to certain obsession themes such as harm, contamination, relationship etc… learning that OCD was an inability to tolerate generic doubt, was a lightbulb moment for me. A piece of information that was very validating and ironically gave me an answer to a question I’d been asking myself for so many years ‘What is wrong with me?’ (until OCD made me doubt my diagnosis too, something I hear a lot of people with OCD say happens to them too!). It also simplified a disorder that I felt had a tight and complex grip on every aspect of my life, a disorder that told me it was ‘COMPLETELY untreatable’. Reducing the disorder to an intolerance of doubt/uncertainty made me feel like I had one ball to juggle (working on an intolerance of doubt), rather than a million (What if this? What if that? Could I? Would I? Should I? Did I? Did they?). It was all DOUBT.

Disorder

When I was diagnosed with OCD, I was so pleased to understand what had been happening to me finally but I was disheartened when I started to tell people and I’d be met with opinions such as:

‘Everyone is a little OCD’

‘Oh I do that too’

‘I have those thoughts and I don’t have OCD’

‘Everyone has superstitions’

It helped me to be able to explain what the difference between an odd obsession/compulsion and OCD is.

Obsessions and compulsions become disordered when they start to take up a lot of time, cause significant distress, and impair functioning. The disorder takes a person’s attention and time away from everyday tasks such as getting dressed, eating, going to work, relationships, education, socialising, etc. When obsessions and compulsions impact a life this way, it isn’t fun or trivial. It’s a debilitating mental health disorder that deserves as much attention and care as any other.