Delving further into life with OCD – considering OCD from the perspective of social media portrayals

Trigger warning: This article discusses symptoms and resulting experiences of obsessive compulsive disorder. It also involves discussions of misinformation and doubt skewing beliefs, as well as brief mentions of paedophilia.

What is obsessive compulsive disorder? 

Obsessive compulsive disorder is a mental health disorder that is considerably misunderstood. Although only 12 in every 1,000 people suffer from the disorder, it is still one of the top 10 most debilitating disorders according to the World Health Organisation. While the disorder is characterised by the presence of intrusive thoughts and obsessions alongside compulsive behaviours to relieve distress, stigma paints the disorder as relating to enjoyment of cleanliness and orderliness or – more recently – the relation of the term intrusive thoughts to impulsive actions. Despite the information shared by these inaccuracies, those with OCD do not enjoy the behaviours they undertake, using them to relieve distress. 

OCD symptomology

OCD is a heterogeneous disorder, meaning people who have a diagnosis of obsessive compulsive disorder can have a variety of different experiences of their symptoms. Alongside the stereotypically presented symptoms that relate to cleanliness and orderliness, symptoms can also appear as intrusive thoughts around topics such as harming others, paedophilia, or questioning one's sexuality. 

Compulsive behaviours can also take the form of consistent checking, having to do things in a specific way or order, or mental rumination to name a few of the ever-evolving examples. These thoughts and the behaviours they drive people to do are very distressing, and frequently cause feelings of doubt or lead people to restrict themselves as they avoid activities that may lead to intrusive thoughts occurring.

The social media portrayal of OCD

If you have been on TikTok or any social media platforms recently, you may have noticed the use of the term 'intrusive thoughts' to refer to acting impulsively or seen people such as the Kardashians referring to 'being OCD' when organising fridges or cleaning their houses. These portrayals misrepresent the disorder, displaying it as something that is enjoyable rather than the distressing and anxiety-inducing reality. 

However, within the OCD community, attempts to combat this misinformation through education are arising. These posts share personal experiences or facts about the disorder through a variety of post formats such as infographics and memes adapted to match the topic. 

The first study of my Masters by research degree involved collecting and analysing posts that discuss obsessive compulsive disorder to determine the discussion around the disorder online. This saw many different experiences being shared as posts involved people with OCD sharing their symptoms, alongside their obsessional thoughts and compulsive behaviours. 

The presence of stigma was noted, but there were more posts countering these through educational information to explain why they are incorrect. Further posts discussed the presence of doubt within the disorder as well as the importance of control. The emotions that resulted from symptoms such as the prevalence of guilt or shame also occurred while OCD was recognised as holding people hostage through symptoms. 

Distress was commonly discussed alongside the repetitive nature of the disorder. The consistent and relentless symptoms were often noted alongside the variety of symptoms that were present. It was mentioned that people with OCD tend to feel alienated and different to those without the disorder due to the symptoms they experience.  

Researching experiences of OCD

In light of the findings of the first study, the second study used the concepts that arose to guide questions in interviews with people who had a diagnosis of obsessive compulsive disorder. This resulted in findings that both align with and build on that of the previous study. Certain themes such as doubt were also present in this study as doubt was demonstrated through doubt over one's actions, thoughts, or beliefs. 

Interviews revealed participants to be questioning their actions or thoughts, ruminating on whether something actually happened, or their values. Control was also discussed in interviews alongside the use of compulsions to protect against negative events taking place. There was a relation between these and responsibility as an inflated sense of responsibility was demonstrated. This inflated sense of responsibility led to the completion of compulsions as these were linked to the prevention of negative events, therefore providing a sense of control no matter how misguided this actually is. This was deemed as the compulsive behaviours acting as a protector for the person with OCD or whomever they are aiming to protect. 

Interestingly, when referring to their OCD, participants used descriptive imagery in interviews. This was predominantly negative, as the content of the imagery involved violence, restrictions, and the pressure of time-consumption caused by the symptoms. Common practices among CBT treatment for OCD and other disorders often involve reframing thoughts such as those expressed in these interviews towards more positive ideas. However, this negative imagery indicates the negative thoughts around OCD and the lack of ability to reframe these alongside the devastating and exhausting nature of the disorder. 

Further findings saw discussion of one's own symptoms alongside discussion of how symptoms might present themselves in others. This wider knowledge of obsessive compulsive disorder was demonstrated within people with OCD; however, they also shared how those around them lacked knowledge about the disorder and instead believed stigmatising stereotypes about the disorder. This caused them difficulties when trying to share their diagnosis or seek help due to a fear of rejection, with this being a reality for some when they finally do brave the conversation. 

Both of these studies saw the presence of distress, as this was a common feature resulting from symptoms of obsessive compulsive disorder. Distress appeared as a result of a multitude of different reasons including intrusive thoughts, compulsions, and the repetitive nature of these. Feelings of alienation were present within this study as well as the first, as there were both internal barriers, such as mentally feeling different and isolated, alongside external barriers of being made to feel different that caused these feelings of alienation. 

What does this mean? 

This study saw discussions of OCD on social media centre around education or personal experiences about the disorder. Sharing personal experiences can build communities and allow others with OCD to better understand themselves and their symptoms. When talking to the people with OCD in interviews, their symptoms were the most salient aspect of the disorder as they openly discussed what, how, and why they were experiencing certain thoughts and resulting processes. 

The resulting emotions of these such as guilt, shame, distress, and feelings of doubt were prominent within their experiences, tainting thoughts to make them reconsider what was previously believed to be true. Certain processes such as avoidance took on a cyclical sequence as intrusive thoughts and compulsive behaviours were seen to lead to avoidance to prevent more symptoms, with the same pattern repeating once the situation arises again.

While OCD seems like a simple disorder to understand as there are two main overarching characteristics, it is multi-faceted and heterogenous, meaning there are many different ways the disorder itself can be experienced. This is crucial to understand since stigmatising posts online and conversations are still prevalent, often focusing on a simplified and trivialised impression of the disorder and downplaying symptoms. Although people with OCD shared the challenges they faced as part of the disorder, it was apparent that some viewed it as part of their journey, and that they would not be who they were today without their experiences. Overall, this research demonstrates the complexities of obsessive compulsive disorder through the varied and complicated experiences of those with the disorder.