Obsessive-compulsive disorder (OCD) is a mental illness that affects about 1.2% of the UK’s population and I am one of these people. I’ve had OCD since I was a child and there are common myths that I’ve heard for almost two decades that need to be debunked. Misconceptions of OCD trickle down from media depictions in television and film, celebrity gossip stories and even the healthcare system itself. And as a silent sufferer, being surrounded by this misinformation is almost as difficult as living with the illness.
Misconception of OCD: It’s a quirky personality trait
One of the primary misconceptions about OCD is that it is a personality trait. Images of a hand-washing neat-freak, germaphobe, picky-eater or pedantic organiser comes to mind when people mention OCD. The idea that these behaviours make people a little weird, unique or even special prevents the general public from seeing OCD as the illness that it is.
I started taking Psychology classes at 16. I was enthusiastic to learn about the history of the subject and mental illnesses in particular. But I was shocked by what I experienced. In a class early into the course, the subject of mental illnesses was brought up by our teacher.
I was surprised and disheartened when a girl in my class, let’s call her Lisa, immediately claimed to have OCD. With a broad smile on her face, Lisa began talking about all the ways it made her ‘weird’ and ‘different’ from everyone else. But I noticed that the things she said were OCD did not match diagnostic criteria for the illness. There was no sense in her tone nor her story that OCD brought her any discomfort or distress. In fact, she relished in the reputation that she developed as that ‘quirky’ girl with OCD in our class. Quietly, it brought me a lot of sadness. Lisa used OCD as an adjective to describe herself. To her, and eventually the rest of the class, OCD was another word for ‘cool’ and my experience of OCD was anything but.
Characters with OCD on TV and in film are played mostly for laughs. Think Sheldon Cooper from The Big Bang Theory. OCD’s reputation has made it so that even in 2021, show-writers feel confident in portraying the illness as the one mental illness that doesn’t have to be taken seriously.
My Psychology class experience became the norm with my experience of OCD discussed in general conversation. Neither my Psychology teacher nor my GP seemed to have a good grasp on what OCD was. Over time, I realised I was asking for help from a system that didn’t actually understand the illness that it was treating. OCD is diagnosed when it disrupts your normal functioning. For example, repeatedly checking, say 20 times a day, to make sure that your stove is off may be a symptom of OCD.
OCD consists of ‘Obsessions’ and ‘Compulsions’. If you don’t have obsessions and compulsions, you don’t have OCD. OCD is a unique mental illness because its innocuous reputation has led people to view it as synonymous with harmless traits like valuing hygiene or being punctual. Frequently, I meet people who use the term ‘OCD’ to describe themselves or others but who do not know what the letters stand for… It’s quirky depiction in the media makes people view it as laughably weird or comedic. But not stressful or dangerous. Therefore, sufferers of OCD may not realise that their behaviour is symptomatic of an illness because the depictions of OCD on TV look anything but what it really is.
Misconception of OCD: It only affects white men
The way that OCD is depicted in the media has a large effect on the misconceptions surrounding it. It’s rare to see people on TV talking about OCD who aren’t neuro-typical white men and boys. I’ve felt that the portrayal of a quirky white male with OCD in the media has distracted doctors from taking my diagnosis seriously as a mixed-race female. I am met with surprise whenever the people around me find out that I have OCD. I’ve never seen prominent media figures or characters who are OCD sufferers and also BIPOC or LGBTQ+. Somewhere in history, OCD gained the reputation that it only affects white boys and men.
More boys are diagnosed with OCD than girls in childhood. But by their early twenties, more women are diagnosed with the illness. Due to biases in the way mental illnesses are viewed – much like how eating disorders are associated with women and girls, girls are often misdiagnosed or not diagnosed at all, even if they’re showing forms of OCD while they are still a child.
The truth: Depicting OCD this way is no new pattern
In the television soap-opera EastEnders, the show-writers recently attempted to depict a portrayal of OCD with the character Bobby Beale. A white male teenager. The writing for his character was heavily criticised. Critics have suggested that the depiction of OCD in such a popular show is not dispelling myths about people with OCD, but further encouraging a stereotypical image of the illness.
When I heard about the show-writer’s desire to include OCD in a new storyline, I was hesitant but hopeful. I hoped that this portrayal would follow in the footsteps of other successful EastEnders storylines I’d seen before. But I was extremely disappointed to find yet another stereotypical depiction of OCD that was lazy at best and harmful at worst. Ashley Fulwood, the spokesperson for OCD-UK, one of the biggest OCD-related charities in the UK, suggested that with such a big platform in the UK, the show had a “responsibility to educate their viewers” on what OCD actually looked like.
After introducing the OCD storyline, EastEnders decided to tackle a schizophrenia storyline to a greater degree of accuracy. This left many viewers confused about the poorly researched treatment of the OCD storyline. Fulwood stated that the charity would have welcomed consultation by the show’s writers, but that they were not approached. This was a wasted opportunity that could have started to right the wrongs of previously poor depictions of OCD.
The truth: OCD can affect anyone
I’ve recently thought about all of the depictions of OCD I’ve seen in fictional media. I realised that I’ve never seen the illness depicted in a character that wasn’t white, male and stereotypical. I also noticed that OCD is usually included within stories in the comedy genre. Sometimes OCD is depicted as being a character’s ‘superpower’ that makes the character feel or see things uniquely. But OCD isn’t a gift. It’s an illness and suggesting otherwise trivialises the struggle of real OCD sufferers.
OCD has strong comorbidity with other mental illnesses. This means that if you have OCD, you are likely to suffer from other illnesses. The most common is major depression. But tic disorders (like Tourette’s), social anxiety disorders, panic disorders and eating disorders are also common. OCD does not discriminate. While it has long been associated with young men, there is no evidence suggesting men are more prone to OCD. In fact, the illness is currently being diagnosed in women slightly more often, as of 2021. The preconceived image people have of OCD affects how accurately it is diagnosed. There are more BIPOC OCD sufferers out there than people realise. Due to stereotypes, many of these people struggle to be taken seriously when they do ask for help.
Misconception of OCD: It’s harmless
Most OCD sufferers experience emotional discomfort from their obsessions and resulting compulsions. But for some OCD sufferers, the experience of the illness goes far beyond a little discomfort here and there.
In addition to OCD, I have two lesser-known associated illnesses called Trichotillomania and Dermatillomania. These are hair and skin pulling/picking compulsions respectively. These illnesses can cause emotional distress and physical damage to the hair follicles and skin. In extreme cases, they can lead to skin infections and alopecia. Trichotillomania and Dermatillomania can be mild or severe. For me, I’ve found they have gotten worse for me as I get older and because of them, I have some permanent skin and hair damage. Periods of stress are likely to exacerbate these symptoms.
A symptom some OCD sufferers will have is hoarding. Hoarding sufferers may spiral out of control slowly over the years or very quickly, usually after a traumatic event like a death in the family. Hoarders retain items of little to no use in order to fill a void in their life. They may make excuses for keeping items that are broken, empty or useless. This is because keeping items around them can give them comfort and a sense of control. Hoarding can lead sufferers to become sick from an accumulation of germs in their home. Their hoarding behaviour might begin to push family and friends away. Extreme hoarders have lost their homes due to the safety hazard it poses to neighbours or their landlord.
An uncommonly spoken symptom of OCD is intrusive thoughts. People who experience intrusive thoughts with OCD can be too ashamed to admit that they have them. Intrusive thoughts are thoughts that a person feels are involuntary ideas or concepts that invade the mind of the sufferer. These could be intrusive thoughts of a sexual nature or concerning violence or religious blasphemy etc. Some people with OCD experience intrusive thoughts that they’d never willingly think about. They might experience a feeling that the thoughts do not belong to them and follow them daily. The thoughts might be about hurting their child or thoughts about harming themselves despite them having no desire to do either in reality.
‘Pure O’ is another form of the illness that people rarely speak about. People with ‘Pure O’ have intrusive thoughts and internal compulsions which a person may not recognise as compulsions at all.
OCD can lead to suicidal thoughts. People with OCD are approximately 10 times more likely to attempt suicide than someone without the illness.
Misconception of OCD: It’s the least severe mental illness
The first time I told a friend I had OCD, it was out of pure necessity. I confided in my friend that I had OCD because there were things that she would do that constantly triggered my compulsions. Let’s call her Ruth. Through an awkward silence, I waited for Ruth to respond. I waited for a plethora of questions about the illness. I even expected to finally be met with some understanding, considering it took a lot of bravery to say it out loud. But what I wasn’t expecting was to be accused of lying.
Ruth said to me that so many people had described themselves to her as being ‘a bit OCD’, that she’d come to assume it meant that I was a clean-freak and nothing more. She also told me that she hoped I wasn’t saying it for attention because “OCD was a real illness”. The stigma that OCD has developed over the years precedes it everywhere. I cannot count the number of times I have heard the phrase, “I’m a little bit OCD” in my life. People tend to think they know more about OCD than other mental illnesses due to the frequency with which this phrase is said colloquially. But time and time again, the information I am met with from people who claim to know all about it is flawed. And these misconceptions of OCD hurt the people who really live with it, each and every day.
Thinking back to my early Psychology classes, I remember feeling extra disappointed that my Psychology teacher, someone I assumed at the time would know more about the illness than me, watched on in delight as Lisa spouted misinformation about the illness. At times, I’ve looked back on the memory and felt regret that I didn’t correct Lisa myself. But in my desire not to draw unnecessary attention to myself, I chose to stay silent.
As I moved through the mental health system at that age, to finally get some help with my OCD, I was shocked to find so many health professionals were repeating these misinformed beliefs about OCD back to me. We’d argue and as I got older, the conflicts became worse. Eventually, I stopped seeking treatment at all. In favour of learning to live with OCD with my own methods of coping.
Misconception of OCD: If you don’t have a diagnosis for OCD, you don’t have OCD
This is an idea that doctors sometimes promote in order to dissuade people from self-diagnosing and potentially diagnosing themselves incorrectly. But encouraging the belief that OCD can only start with a diagnosis can make undiagnosed people feel as if they’re not valid, that their struggle is being exaggerated or that there is no path for them to seek help. Not all people have easy access to a diagnosis or to professional healthcare and this is a system in the UK that certainly needs to improve.
You can have OCD without a diagnosis. Knowing this at a younger age is something I feel would have brought me a lot of comfort. Maybe it would have given me something to say when Ruth said to me, “You said you have OCD, but do you even have a diagnosis?”
I can still remember the annoyance on the face of my psychiatrist when I explained how my symptoms lined up with the criteria in the DSM-5. He snarled and said, “You don’t need my help. If you know everything because you Googled it, then why are you here?”. While I knew that OCD was incurable before I went to a psychiatrist, receiving such angry responses for doing my own research on the illness was upsetting.
The misconceptions of OCD could be demystified with school education about the subject. I believe that students should be empowered with the knowledge about mental illnesses so that if they recognise these symptoms in themselves, they can be directed to professional help sooner.
Admittedly, there are only a few treatments for OCD recognised by the NHS and CAMHS. One of the most popular options is Cognitive-Behavioural Therapy or CBT. It doesn’t work for everyone, as it didn’t for me. This might be because it has been touted by professionals as a one-size-fits all treatment for OCD in the past. This leaves people with the false impression that it is a cure, rather than a treatment. When I told my therapist that CBT wasn’t working for me in our sessions, the only further treatment offered to me was group therapy specific to anxiety, rather than OCD. This option may be helpful to some, but I knew that it would not suit me.
Misconception of OCD: OCD is all about cleanliness
When I visited a GP about my OCD for the first time, the only question my GP asked me was if I was “one of those germaphobes”. When I said no, he shrugged and asked me what I wanted him to do about it. The lack of education about OCD is present even in the industry that should know the most about it – healthcare.
Because a fear of germs is the primary stereotype of OCD, the other common symptoms of the illness can go unidentified by doctors. OCD sufferers can have one or multiple symptoms that affect them and contrary to the stereotype, you can have OCD without being obsessed with hygiene. Not getting help for my OCD when I first needed it gave my illness time to develop other symptoms and increase in intensity. Later on I developed hygiene-related obsessions and compulsions that I didn’t have before this doctor’s visit.
OCD can be insidious. Many sufferers find that if they manage to deal with one symptom of OCD and they stop giving into the compulsions, then they might develop a new symptom in its place. Symptoms can come and go, transform and develop with varying degrees of severity. They can sneak up on you and before you know it, you’ve developed a new ritual within days that takes weeks, months or years to break.
Misconception of OCD: We are all ‘a bit OCD‘
This myth about OCD bothers me the most. OCD is not an adjective. It isn’t a describing word for a person that is picky, uptight or orderly. It’s an illness with criteria that individuals can either have all symptoms from or a few. If ordering your clothes according to colour brings you joy, that’s great! But it’s not OCD. Obsessions and compulsions can cause a little distress or a lot of it. If colour-coding your wardrobe takes up an abnormal amount of time in your daily routine. Feeling like an act you don’t want to do but ‘have to do’, you could have OCD. OCD is not enjoyable, fun or something that makes you special.
Inaccurate depictions of OCD in the media have led people to think that collective anxieties that derive from our culture are symptoms. For example, not liking odd numbers, having a fear of the number 13, ordering coins a specific way in your purse etc. are not symptoms of OCD. To have a diagnosis of OCD, these obsessions would have to create lasting anxiety that impairs daily life and cause compulsions to lessen the anxiety caused by obsessions. But OCD does range on a scale in severity like other illnesses and OCD can be managed, but these issues on their own do not constitute an illness.
While therapy didn’t work for me, it works for many. You might find you have the perfect therapist from session number one, or you may have to try a few before finding someone you ‘click’ with. If you think you have OCD you should contact a healthcare professional or alternatively find a support group that may help you learn more about the illness and coping mechanisms.
Who to contact moving forwards
If you’re experiencing suicidal ideation, you should contact someone straight away.
Samaritans is available 24 hours a day. To speak with someone you can:
Call 116 123
Text SHOUT to 85258
Email jo@samaritans.org
Here are some organisations you can contact about OCD:
Disclaimer: I am not a healthcare professional and this article should not be used to diagnose anyone with OCD or any other mental illness.
Find more lifestyle articles here >
Written by Chanté-Marie Young
Illustrated by Francesca Mariama
