What's it really like to live with OCD?

Many believe that OCD equates to tidiness and cleanliness, but the assumption is at best reductive and at worst damaging. Richard Taylor explains what life with OCD really looks like, how it can impact work, and the things we can all do to support those living with OCD.

When you think about obsessive-compulsive disorder (OCD), it’s likely that what springs to mind is a color-coordinated bookshelf. Perhaps even a colleague who always has a perfectly neat and symmetrical desk.

You probably didn’t picture a young man having a breakdown in his local Sainsbury’s because he found chewing gum stuck to the bottle of wine he was about to buy. Presumably, you didn’t imagine a father, after the birth of his newborn baby, taking himself to the police station and falsely confessing to being a paedophile, wrongly claiming to have sexually assaulted his child. Or a mother, as part of structured treatment for OCD under the guidance of a therapist, sleeping with a knife under her pillow so she could learn that even with an object like that in such close proximity, she would not murder her children.

This is the tragic, desperate and often overlooked reality of what life with OCD is really like.

OCD is a debilitating mental illness that affects roughly 1-2% of the population of the UK; that’s more than all of the people who live with Parkinson’s and Alzheimer’s disease combined. OCD Action – the UK’s largest OCD charity – defines OCD as “intensely negative, repetitive and intrusive thoughts, combined with a chronic feeling of doubt or danger (obsessions). In order to quell the thought or quieten the anxiety, people will often repeat an action, again and again (compulsions).”

According to OCD Action, it can take 12 years from the onset of OCD until a person receives treatment. There are many reasons why people with OCD delay seeking help, including a fear that they will be committed to a secure institution, the stigma associated with mental health disorders, or simply a belief that no one can help them. Sadly, people are not always aware that what they’re struggling with is OCD (which is why awareness campaigns are as vital as ever).

We’ve all been there; stood on the platform, waiting for a train, and the thought pops up, “What if I jumped?” or “What if I pushed that person in front of the train?” People without OCD would be able to brush those thoughts aside, ironically with little thought. But those living with OCD would be unable to shake them, frantically performing rituals – mental or physical repetitive behaviours, for example, repeating a mantra in their head or tapping their foot a certain number of times – to get rid of the thoughts. These compulsions could either be internal – commonly referred to as ‘pure O’ – or external, but either way, they would cause significant stress and anxiety for the person experiencing them.

One of the most common misconceptions surrounding OCD is that the behaviours and compulsions are the main aspect of the disorder. In reality, the intrusive thoughts are the driving force behind the compulsions that people carry out, and these thoughts can focus on a plethora of topics.

A common focus of many people’s intrusive thoughts is their loved ones, often leading to that person getting caught up in the ritualistic behaviour intended to get rid of the resulting anxiety. Taking this into account, it’s easy to see how OCD not only affects the individual who has the illness, but can also impact the lives of friends and family members.

Another harmful and ill-informed stereotype associated with OCD is that people who live with intrusive thoughts that are particularly violent or sexually explicit in nature might be a danger to themselves or others. Unfortunately, this creates such a damaging narrative for people living with OCD and adds to the stigma that prevents people from speaking about the illness. It’s widely understood that people with OCD are more empathetic, caring, and less likely to cause harm because they go out of their way to counteract the barrage of negative thoughts.

OCD affects people wherever they are, and in a workplace setting, the effects can create serious issues for the individual and possibly the people they work with, too. If someone is experiencing an intense period of intrusive thoughts followed by compulsions, they may find it difficult to concentrate and could take longer than their peers to complete a task. Additionally, if the person is struggling with intrusive thoughts about others – for example, harm-based or sexual thoughts – they may choose to avoid certain people at work.

Similarly, a fear of contamination is often magnified at work, where toilets, kitchens, and common spaces are typically shared by a larger number of people. This could result in the person with OCD taking longer when using the bathroom, feeling unbearable discomfort when touching commonly handled objects like door handles and lift buttons, or totally avoiding specific rooms and situations altogether.

With the many unhelpful and insensitive labels attributed to OCD, people tend to go extraordinary lengths to carry out their compulsions in secret. Consequently, it may not always be physically obvious that a colleague or friend is struggling with OCD. Many people living with the illness can function at very high levels and appear, on the outside, to be coping well. This can be misleading and cover up the fact that inside, they could be fighting a desperate battle.

There are measures that can be put in place by employers to help those who may be having a difficult and stressful time at work because of their OCD. Reasonable adjustments in line with the Equality Act are an effective tool to provide much-needed relief for those struggling, and this approach helps to strengthen a sense of inclusivity for people living with mental illnesses. This leads nicely into creating a cultural shift in the workplace, providing parity wherever possible between physical and mental health. Ensuring that there is a good level of mental health literacy and training within your workplace also signals a commitment to caring for your employees’ wellbeing.

It can be incredibly difficult for colleagues and friends to witness someone suffering with OCD. Most importantly, offering a supportive, compassionate and non-judgemental ear is encouraged. OCD creates an atmosphere of shame, guilt and embarrassment for those living with the illness, and listening to them with kindness and sensitivity can provide a safe outlet for their worries and fears.

Crucially, people with OCD are not seeking to be understood; more that they wish to be accepted for who they are. It’s common for people with OCD to feel defined by it, so letting the person know that you see them and not just their illness is empowering and offers them hope.

For the most part, people are more accepting of mental illnesses like depression and anxiety, largely due to fantastic advocacy and awareness campaigns over the last decade. However, awareness weeks and campaigns for mental illnesses like OCD are particularly important because the condition is often misunderstood and misconstrued.

More than ever, celebrities and people in the public eye are opening up about their battle with OCD. Recently, George Ezra spoke on a BBC Sounds podcast about how OCD has affected him for most of his life, especially in recent years. Writer and journalist Bryony Gordon has documented her fight against OCD in various books, podcasts and fundraising campaigns. She paints a vivid, unflinching picture of the realities of her life with this devastating condition.

OCD has the ability to strip people of their confidence and dignity as well as steal away their time and quality of life. Fortunately, with the right care and access to specialist services, OCD can be treated effectively. That’s why, beyond awareness weeks, it’s important for everyone to know what living with OCD is really like, and the things they can do to help.

Richard Taylor is a writer, mental health advocate, and volunteer for OCD Action and Time to Change. He’s a regular contributor to the Guardian, Happiful Magazine and various other national and industry titles.