Living with OCD: Breaking the stigma

It is common for most of us to focus on a specific thing – a song that plays all day in your head or something that someone said at work or in school, or thinking about an upcoming event.

For many, we may be compelled to repeat something. It could be checking if the door is locked at night not only once but twice or more or making sure that the stove is off.

All these experiences are not unusual and common for many people. However, imagine if these thoughts and repetitive actions are debilitating, worrying and consuming – this is what obsessive compulsive disorder (OCD) is like. 

What is obsessive compulsive disorder? 

About 3% of the world’s population is affected by OCD [1]. More common in boys, this disorder can begin manifesting during childhood, particularly at the age of 10. The rest of those diagnosed with OCD begin to demonstrate symptoms before they turn 25 years old. Most of those diagnosed before 25 are women. These symptoms do not usually begin to develop after a person turns 30 years old. 

In those with childhood onset, the disease is thought to be inherited or genetic. In OCD, individuals are troubled by distressing and intrusive thoughts or obsessions [1] .

To relieve these obsessions, individuals often feel pressured to perform compulsions or repetitive behaviors. For example, a woman with an obsession that her hands are dirty may have the compulsion to wash them several times. Meanwhile, a man who might fear that intruders will come into his house and worry that the door is not locked may lock the door several times through the night. 

Living with OCD: Breaking the Stigma

While OCD may be thought to be hereditary, the actual cause of this condition still remains unknown. However, some risk factors associated with this illness have been identified, which include the following: 

  • Recent Streptococcal infection 
  • Prior history of sexual or physical abuse 
  • Certain abnormalities in the brain 
  • History of OCD in sibling, child, or a parent, especially if the family member developed this condition during childhood

What are the symptoms of OCD? 

The main symptoms of OCD include obsessive thoughts followed by compulsive actions. When these symptoms are too time consuming, this can cause significant distress and functional impairment. 

Obsessions are observed to be repetitive, persistent, distressing and anxiety provoking especially if these thoughts are repetitive. Obsessions can relate to phobias or any kind of fear. Some of the common ones include the following: 

  • Fear that focuses on asymmetry or disorder: an individual experiences an irresistible need to properly order things. Any detail that is out of place worries those with OCD. For instance, an individual is obsessed with arranging food on the plate and any incorrect presentation of the food can lead to an obsession to rearrange the food constantly. Another example includes the obsession to properly arrange the socks in the drawer. 
  • Fear of committing a sexual misconduct or an act of violence: There is the nagging fear that an individual may lose control and harm others or may do sexual misconduct. For example, a mother may constantly worry that she may kill her baby or suffocate her children or an individual may fear committing sexual misconduct in public. 
  • Fear related to being in an accident: There is the persistent fear that a driver might hit somebody while driving or fear that an intruder may enter the house and kill the people inside. 
  • Fear of being contaminated: Persistent worry that an individual may contract the flu or diseases or may be dirtied when going out of the house. 

In most cases, individuals with OCD are aware that their intrusive and obsessive thoughts are not normal. Hence, they try to avoid these or brush them off. For some, satisfying these fears with compulsive behavior may bring them temporary relief. If you’re afraid of germs, you may repeatedly wash your hands several times out of compulsive behavior.

Impact of stigma on individuals with OCD 

A study [2] published in the Industrial Psychiatry Journal explored the quality of life of patients with OCD, including the impact of stigma on their illness. The study authors recruited 100 patients diagnosed with OCD as per Diagnostic and Statistical Manual of Mental Disorders (DSMD) fifth edition. Severity of OCD and stigma significantly and negatively impacted their health-related quality of life. 

The study authors found out that stigma can reduce health-related quality of life since people with OCD may socially isolate themselves from others. In turn, this increases the negative impact of stigma on their quality of life. In addition, stigma reduces self-efficacy and self-esteem, which in turn forces individuals to miss treatment appointments by their doctors.

These missed consultations and therapies increase the severity and chronicity of OCD. In addition, repetitive behaviors are often seen as socially unacceptable, making it hard for them to function at work.

Findings of the study revealed that highly stigmatized individuals were more likely to delay their care or less likely seek care and conceal their condition. Many of these individuals experiencing stigma of their disorder are also less likely to maintain healthy social relationships, enter marriage or maintain their employment. All these events can impact their quality of life. 

The present study also found out that when the severity of the condition increases, this can reduce their quality of life. Specifically, the distressing nature of OCD and preoccupation with obsession and compulsions can affect their daily life. 

Stigma likewise increases with the severity of the disease. Many of the participants in the study demonstrated deeper internalized stigma as they learned more about their disease. Diminished self-esteem leads to feelings of worthlessness and shame.

The patients start to accept negative stereotypes about mental illness and often develop negative self-images. Further, these patients start to accept the label of being mentally ill as their insights about their condition increases. 

Addressing stigma 

Stigmas associated with OCD come in different forms:

Public stigma: This type of stigma develops from the beliefs and stereotypes about people with OCD, often leading to discrimination and prejudice. 

Self-stigma: As soon as individuals internalize public stigma, they may start to accept the stereotype of OCD. Stigmas associated with OCD come in different forms.

A study [3] published in the General Psychiatry journal reported that patients who internalize stigmatization often have poor adherence to medication. This is an important concern since medication adherence is necessary to control the symptoms of OCD.

The lead author of this study, Eram Ansari, concluded that, “High levels of internalized stigma were associated with lower adherence to treatment which suggests that internalized stigma may be a very important factor influencing medication adherence in patients with OCD.” 

Breaking the stigma of OCD 

Individuals can break the stigma of OCD by doing the following: 

Seek help from others and support those with OCD 

Individuals with OCD and their lived experience of the disease have a better understanding of their own condition. Seeking help from healthcare professionals, therapists, friends and family members is an important step to your journey to recovery. 

Living with OCD: Breaking the Stigma

Talk openly about personal experiences with OCD 

Peer support is critical in helping others suffering from OCD learn from each other’s experiences on how to address stigma. Talking openly about personal experiences with OCD can help others overcome their difficulties and increase their ability to seek medical help and support from friends and family members. 

Separate the individual from the disease 

Separating an individual from his or her OCD is essential in viewing the person holistically. Providing support through reminding them of their value and how OCD can be treated and managed could help improve health seeking behavior. 

Stay educated about OCD and educate others 

Learning more about OCD through lectures, readings and counseling can help an individual better manage his or her condition. Educating others on the impact of OCD and how to cope with stigma can help increase self-esteem and self-efficacy of those suffering from the illness. 

Encourage equality between mental health and physical health 

Due to the stigma associated with mental illness, not all with OCD may access help. In turn, this can only worsen their presenting condition and delay recovery. However, when both physical and mental health receive equal attention, this can help individuals recognize the need to also address their mental health needs. 

In conclusion, public and self-stigma can only worsen the condition since this can lead to discrimination and prejudice. In turn, this reduces the desire of individuals to seek help and recover from OCD.

Worsening of OCD symptoms can only heighten self and public stigma. Therefore, educating communities on OCD and how to treat it could lead to better understanding and acceptance of people with it.

Individuals can also find support from family members and peer groups to help them manage symptoms of their condition. Finally, accessing medical help is crucial to recovery since both medications and therapy can reduce symptoms of the disease and lead to better health and wellbeing. 


Photograph: titovailona/Envato
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