What it's really like to have OCD

Sara McQueen, 24, was diagnosed with obsessive compulsive disorder (OCD) and pre-menstrual dysphoric disorder - a severe form of premenstrual syndrome also known as PMDD -earlier this year.

"My brain hung on to things - litter in the road, strangers sneezing too close on public transport. It's like the brain can't let anything go. It compulsively taunts itself with awful thoughts," she says.

"It's a little like I'm searching for things which align perfectly with standards that I don't have. I stopped eating because I could never find the 'right' food. I didn't want to leave the house in case I saw something I didn't like to see, and those things ranged from anything from crying children to dirty light switches."

McQueen says she has become suicidal in the past and turned to alcohol. "I was hungry, thirsty but unable to sort out those things because the OCD told me that the food would turn to dirt in my mouth, that the water was rancid and that if I left my room to go to the bathroom, I would never be able to get back in again," she says.

OCD also caused her to pick at her skin. "I search for marks, spots, hairs, anything that I can remove, and cause a lot of damage to my skin," she says. Sara is now taking medication and having therapy.

What is OCD?

Craig Shirley, a therapist and co-founder of the OCD Treatment Centre, says OCD often means experiencing severe anxiety around the things that we care about.

"This often leads the person to become afraid of their thoughts, or environmental triggers that make them feel anxious. They then perform behaviours known as rituals to control their anxious symptoms, which in turn only serves to give more meaning and importance to the thoughts," he adds.

"The person then gets more intrusive thoughts and increasingly feels the need to switch these feelings off more often, which eventually can become a debilitating cycle of thoughts, feelings and behaviours."

Unlike those who don’t suffer from OCD - who have thoughts they can ignore - someone with the condition will focus on the thought and begin to perform rituals to ensure the thought doesn’t come true, Shirley explains.

OCD goes far beyond the common perception of handwashing - and it can be extremely debilitating and disrupt all aspects of someone's life, from work to friendships and relationships. Simple tasks such as eating, cooking, washing or taking the rubbish out can become impossible.

"Also, OCD can leave people feeling depressed as well as having low self-esteem, in which case these can also be factors for a person struggling to have a normal lifestyle," Shirley says.

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Misconceptions about OCD

Despite the severity of OCD, the term is commonly misused to describe people who like cleanliness or organisation - which underestimates the affect the condition can have on people with it.

"One of the biggest misconceptions regarding OCD is that some people can be a 'little bit OCD'," Shirley says. Although we may occasionally have intrusive thoughts, have feelings of anxiety or be superstitious, it is not the same as having the condition.

Carrie Wheeler, 40, has OCD as well as other mental health conditions and multiple sclerosis. She says another misconception is that people with OCD are only obsessive regarding cleaning, but the condition can actually manifest in many different ways.

"I think the biggest misconception I know of is that all people with OCD are clean freaks. We do not all furiously clean our house or have an extreme fear of germs and wash our hands continuously," she says.

For Wheeler, OCD affects her home life and the way she eats, as her food must be prepared in a certain order. "If I lose something, I spend hours looking for it, staying awake until I find whatever it is - often keeping my husband awake while looking around in my bedroom for what it is," she says.

Whether someone develops OCD depends on a number of factors, including personality, genetics or life events. Although it is a long term (chronic) and debilitating condition, many people overcome OCD with treatment and support - or are able to reduce the impact it has on their lives.

How to treat or manage OCD

Therapy

"There are many ways that a person can get treatment for OCD," Shirley says. "The most common would be to visit your GP in order to explain your symptoms, before being referred to a specialist service such as a cognitive behavioural therapy (CBT) therapist."

With talking therapy, such as CBT, a person with OCD can learn to manage symptoms to regain an improved quality of life.

Shirley says CBT can be successful in the treatment of OCD, but other anxiety management tools can help alongside the therapy: "Often other principles, such as mindfulness and awareness of thoughts, education around the condition and the brain’s role in it, as well as a well-constructed relapse prevention programme for the person to follow once they finish therapy."

A therapy called exposure and response prevention can also be included as a part of CBT. This involves encouraging someone to face their fears and let obsessive thoughts happen without following them up with compulsions to 'fix' them.

Medication

Your doctor or a specialist may recommend taking certain medication, as well as therapy.

Support

Getting advice, information and support from organisations which specialise in OCD can help you understand more about the condition and how it can be treated, such as the charity OCD-UK. They can also help prevent isolation and offer a chance to socialise with others.

"Other options include contacting OCD Action or Mind, two very good mental health charities who can help to put you in the right direction," says Shirley.

"It also helps to seek out a therapist who has had experience of treating the condition or who has experienced it themselves, as we find that many of our clients explain that this makes a big difference and helps them to feel understood whilst recovering from the condition."

Further reading

OCD UK: Occurrences of OCD.