Published on the 31 Mar 2023 by Iain Perkes, David Cooper, Jessica Grisham, Katelyn Dyason, Lara Farrell, Lizzie Manning
People can be reluctant to discuss symptoms with their doctor. When they do, their symptoms can be mistaken for other illnesses. Even when people are diagnosed, they don’t always get the right treatment.
Obsessive compulsive disorder, or OCD, is a misunderstood mental illness despite affecting about one in 50 people – that’s about half a million Australians.
Our new research shows how long and fraught the path to diagnosis and treatment can be.
This initial study showed it takes an average of almost nine years to receive a diagnosis of OCD and about four months to get some form of help.
What is OCD?
OCD affects children, adolescents and adults. About 60% report symptoms before the age of 20.
One misconception is that OCD is mild: someone who is extra tidy or likes cleaning. You might have even heard someone say they are “a little bit OCD” while joking about having beautiful stationery.
But OCD is not enjoyable. Obsessions are highly distressing and there are repetitive, intrusive thoughts a person with OCD can’t control. They might believe, for instance, they or their loved ones are in grave danger.
Compulsions are actions that temporarily alleviate, but ultimately exacerbate, this distress, such as checking the door is locked. People with OCD spend hours each day consumed by this cycle, instead of their normal activities, such as school, work or having a social life.
It can also be very distressing for family members who often end up completing rituals or providing excessive reassurance to the person with OCD.
How is it diagnosed?
People with OCD often don’t tell others about their disturbing thoughts or repetitive rituals. They often feel ashamed or worried that by telling someone their disturbing thoughts, they might become true.
Doctors don’t always ask about OCD symptoms when people first seek treatment.
Both lead to delays getting correctly diagnosed.
When people do feel comfortable talking about their OCD symptoms, a diagnosis might be made by a GP, psychologist or other health-care professional, such as a psychiatrist.
Sometimes OCD can be tricky to differentiate from other conditions, such as eating disorders, anxiety disorders or autism.
Having an additional mental health diagnosis is common in people with OCD. In those cases, a health-care provider experienced in OCD is helpful.
To diagnose OCD, the health professional asks people and/or their families questions about the presence of obsessions and/or compulsions, and how this impacts their life and family.
How is it treated?
After someone receives a diagnosis, it helps to learn more about OCD and what treatment involves. Great places to start are the International OCD Foundation and OCD UK.
Next, they will need to find a health-care provider, usually a psychologist, who offers a special type of psychological therapy called “exposure and response prevention” or ERP.
This is a type of cognitive-behavioural therapy that is a powerful, effective treatment for OCD. It’s recommended people with OCD try this first.