What it’s actually like to live with OCD

The reality of living with obsessive compulsive disorder (OCD) is much more than fervent handwashing and ritualistic routines.

When Penny was a kid, she was convinced she had contracted HIV; as she grew older her worst fears became relentless intrusions in her mind.

Unable to rationalise her worries, she would retreat inside her mind and obsess over her thoughts, causing herself – and those close to her – huge distress.

“At its worst I would spend hours a day just ruminating about something,” Penny says.

“It would be the first thing I think of when I wake up in the morning and the last thing I think of when I go to bed.

“I was often not present – I’d be trying to have a conversation but really I wasn’t there, I was in my head.”

Years later, her anxiety was finally recognised as obsessive compulsive disorder.

What is OCD?

Obsessive-compulsive disorder is typically characterised by an intolerance of uncertainty, explains clinical psychologist Dr Andrea Wallace, who specialises in the condition.

“People with OCD experience obsessions that are unrelenting, unwanted thoughts or urges that are distressing,” says Dr Wallace.

“They then perform compulsions, which are repetitive or ritualistic behaviours that are intended to alleviate the distress or prevent a dreaded outcome.

“Obsessions are usually ‘what if?’ thoughts which create doubt, and the behaviours are typically attempts to remove that doubt.”

OCD is recognised as the fourth most common psychiatric disorder in Australia and affects 2-3 per cent of the population – around 500,000 Aussies.

What are the symptoms of OCD?

While the common image of someone with OCD is that of a person who is very orderly or fixated on handwashing or cleanliness, Dr Wallace says it can be difficult to identify.

That’s because most of the anguish is happening inside a person’s mind, with invasive and tormenting thoughts that may dominate their day.

“Obsessions and compulsions are many and varied,” says Dr Wallace.

“An example of an obsession might be a person driving through an intersection and thinking, ‘Did I just hit a pedestrian?’ and then repeatedly circling back to the intersection to check whether there is a body on the ground, checking their rear vision mirror and replaying their memory of passing through the intersection over and over again.”

Dr Wallace says other examples include:

  • A fear of harming a loved one, maybe even a child, and taking actions to not be left alone with that person;
  • A person convincing themselves they have an illness, and compulsively Googling symptoms, getting tested, scanning their body for symptoms, and repeatedly seeking reassurance from doctors or family.

How does OCD impact a person’s life?

Dr Wallace says OCD can be exhausting and extremely debilitating.

“Some people feel like they’re experiencing obsessions/compulsions all day long,” she says.

“It may significantly interfere with their functioning – study, life, career, relationships.

“Some people might not pursue their career, they might choose to not have a partner, might choose to not have children – they’re making choices based on experiencing the symptoms.”

Who is at risk of OCD?

It is not known what causes some people to suffer from OCD, but Dr Wallace says some people can have a genetic predisposition to developing it.

“We also know that for some people, the onset of symptoms occurs in the context of a significant stressor,” she says.

How is OCD treated?

The good news is OCD can be successfully managed through a variety of treatments, including medication, cognitive behavioural therapy using exposure response prevention (ERP), and lifestyle changes.

“The most effective treatments for OCD are cognitive-behavioural therapy (CBT) using exposure and response prevention and/or medication (selective serotonin reuptake inhibitors),” says Dr Wallace.

“ERP involves actually getting them to have the thought, without acting to negate it, so without doing any compulsion, so they can have the experience, and just let the thought be.

“The thought then loses its power, the anxiety goes away.”

Penny says ERP therapy has been “really effective” for her “because it’s all about trying to start living with the uncertainty.”

Penny now manages her OCD with a combination of medication, ERP, and self-care.

“Medication helps to keep my anxiety levels at a manageable level so I can seek therapy,” she says.

“And self-care – for me that probably would be running – but it’s finding things that can kind of work for you.”

Written by Claire Burke.