How Long Do People With OCD Go Without Treatment?

What you need to know

• People with Obsessive Compulsive Disorder (OCD) often go many years without receiving proper treatment.
• On average, the delay between symptom onset and first treatment is about 7 years.
• This delay in treatment can lead to worse outcomes and higher costs for patients, families, and society.

Understanding OCD and treatment delays

Obsessive Compulsive Disorder (OCD) is a challenging mental health condition that can significantly impact a person’s daily life. It’s characterized by persistent, intrusive thoughts (obsessions) and repetitive behaviors or mental acts (compulsions) that a person feels compelled to perform to alleviate anxiety or distress.

One of the concerning aspects of OCD that researchers have identified is the long delay many people experience between when their symptoms first appear and when they receive proper treatment. This delay is referred to as the “duration of untreated illness” or DUI.

Why the delay in treatment?

Several factors contribute to the delay in seeking and receiving treatment for OCD:

1. Early onset: Many people with OCD first experience symptoms in childhood or adolescence. At this age, individuals may not recognize their symptoms as a medical condition or may be hesitant to seek help.

2. Secrecy: OCD often involves thoughts or behaviors that people feel ashamed about, leading them to keep their struggles secret from others, including family members and healthcare providers.

3. Misconceptions: Some people believe that OCD symptoms will go away on their own or that they don’t represent a real medical condition that requires treatment.

4. Lack of awareness: Many individuals and even some healthcare providers may not recognize the signs of OCD, leading to misdiagnosis or no diagnosis at all.

The extent of treatment delay

The research reviewed in this paper found that across multiple studies in different countries, people with OCD experienced an average delay of about 7 years between symptom onset and receiving their first proper treatment.

Even more striking, this delay in treatment often made up more than half of the total time a person had been living with OCD symptoms. In other words, for many people, they spent more time with untreated OCD than with treated OCD.

Here are some specific findings from the studies reviewed:

• An Indian study found that people with familial OCD (where OCD runs in the family) had an average delay of about 5 years before treatment, while those with sporadic OCD had a delay of about 3 years.

• An Italian study reported an average delay of about 7.3 years before treatment.

• A Turkish study found an average delay of 7 years.

• A Brazilian study reported an average delay of 7.7 years.

• Another Italian study found an average delay of about 8.9 years.

Why does this matter?

The long delay in receiving treatment for OCD is concerning for several reasons:

1. Prolonged suffering: During the years without treatment, individuals continue to struggle with distressing obsessions and time-consuming compulsions, significantly impacting their quality of life.

2. Functional impairment: OCD can interfere with work, school, relationships, and daily activities. The longer it goes untreated, the more these areas of life may be negatively affected.

3. Potential brain changes: Some research suggests that untreated OCD may be associated with changes in brain structure and function over time. While more research is needed in this area, it raises concerns about the potential long-term effects of delayed treatment.

4. Increased severity: There’s evidence that longer delays in treatment are associated with more severe OCD symptoms, making the condition potentially harder to treat when help is finally sought.

5. Higher costs: Untreated OCD can lead to higher healthcare costs, lost productivity, and other economic burdens for individuals, families, and society as a whole.

The importance of early intervention

Given these findings, researchers and mental health professionals emphasize the critical importance of early intervention for OCD. This includes:

1. Raising awareness: Educating the public, including children and adolescents, about the signs and symptoms of OCD can help people recognize when they need to seek help.

2. Reducing stigma: Promoting open conversations about mental health can help reduce the shame and secrecy that often surrounds OCD.

3. Improving access to care: Ensuring that people have access to mental health professionals trained in diagnosing and treating OCD is crucial.

4. Training healthcare providers: General practitioners and other healthcare providers should be trained to recognize potential signs of OCD and make appropriate referrals.

5. Supporting research: Continued research into OCD, its early detection, and effective treatments is essential for improving outcomes for people with this condition.

Conclusions

• People with OCD often experience long delays—an average of about 7 years—between symptom onset and receiving proper treatment.
• This delay in treatment can lead to prolonged suffering, functional impairment, and potentially worse outcomes.
• Early intervention is crucial for improving the lives of people with OCD. This requires increased awareness, reduced stigma, and improved access to mental health care.