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Feature: Living with OCD during the pandemic

Living with OCD during the pandemic
OCD “occurs when a person gets caught in a cycle of obsessions and compulsions." Source: The People Speak! (via Flickr)
OCD is more than feeling an in-suppressible urge to clean with only 26.5% of people living with it carry out cleaning rituals, even during the pandemic.

By Jasmine Edge | Contributor

(This article contains themes that readers may find upsetting. If any of the following has affected you please don’t hesitate to contact Student Support at +44 (0)29 2251 8888 or email [email protected])  

The International OCD Foundation (IOCDF) declares that OCD “occurs when a person gets caught in a cycle of obsessions and compulsions.”

“Obsessions are unwanted, intrusive thoughts, images, or urges that trigger intensely distressing feelings […] Compulsions are behaviours an individual engages in to attempt to get rid of the obsessions and/or decrease [their] distress.” 

OCD is a diagnosis that covers a whole range of challenging thoughts and behaviors, which can be categorized into numerous subtypes. Although symptoms may overlap within and between subtypes, how they impact a person’s day-to-day life can vary from mildly to severely. 

Common subtypes include: Contamination OCD, Harm OCD and Pure Obsessional OCD (also known as ‘Pure O’,  it describes someone who may not carry out any visible compulsions, but instead have hidden mental rituals).


What is living with Obsessive Compulsive Disorder really like?

Medha Palav, a student at Cardiff University, opens up to me about having OCD, “I have pure obsessional OCD with intrusive thoughts that cause compulsive behaviour.” Palav says “[I] received a formal diagnosis for anxiety disorder and OCD last year. That trip to the therapist explained a lot of my behaviour. My life started making more sense.” 

Carys Williams, also a Cardiff University student, tells me how her diagnosis of mild OCD, too falling under the pure O subtype, affects her day-to-day life:

“I try not to let it have a big negative impact, but I do get anxious over things and it does put strain on some of my relationships.” 

When asked if the pandemic has affected her OCD in any way Palav explains that:

“my obsessions and compulsions are mostly restricted to my home. And staying at home for such prolonged periods only made them worse. I felt trapped in an endless cycle of them. I also developed a slight obsession with washing/sanitizing my hands.”

On the other hand however, Williams describes her experience in the pandemic as a “surprisingly calm” one, but it wasn’t without a conscious effort:

“Although obviously I was being hygienic, I didn’t become obsessive over sanitising and wiping etc. as I know that if I think about things too deeply, I will become obsessed so I didn’t let it get into my head. […] so I managed to keep everything under control and actually sort of became one of the most relaxed in society with regards to over cleaning”.

Emily (who for this article preferred to keep her last name private) explains how the progress she made in managing her OCD, which is characterised by “intrusive thoughts and compulsions”, was disrupted due to the change the pandemic caused to her routine:

“since going into lockdown I found I was spending a lot more time on my own, even though I was with my family, I wasn’t doing normal day to day activities and my OCD got a lot worse.” 

She also reveals some of the ways OCD had affected her everyday life pre-pandemic:

“it [OCD] makes simple decisions extremely hard to make. Completing my A-levels was hard as I had to keep re-reading lines of books and revision guides and when typing something on the computer felt the compulsion to retype it. Therefore, completing my work took double the time it should’ve taken me.”

The IOCDF sets out that, “In order for a diagnosis of obsessive compulsive disorder to be made, this cycle of obsessions and compulsions becomes so extreme that it consumes a lot of time and gets in the way of important activities”.

Too often the term ‘OCD’ is used as an adjective. Its misuse has trivialized what the accorcyn truly stands for. 

The phrase “a bit OCD” should not be used to refer to the healthy rituals that many practice, for instance checking switches are off, or cleaning surfaces after preparing food. 

It has been estimated that three quarters of a million people (750,000) are living with OCD in the UK, yet having it can feel extremely lonely because of the misunderstanding of what OCD is.

As Palav poignantly puts it:

“OCD is not just wanting things to be arranged neatly or being clean and organized. It takes one to a very dark place which is oftentimes difficult to get out of. It hinders daily activities. It is definitely not a quirk. People should stop romanticising this very serious mental illness.”


My own struggle with OCD – Jasmine Edge

I’ve had OCD since around the age of 11, but I didn’t fully address it until recent years. My obsessive and compulsive behaviours fall into the pure O, contamination, health and harm OCD subtypes.

For a long time I’ve been living with intrusive thoughts that appear in the form of “What if?” questions; followed by compulsions, for example tapping, to prevent a thought from coming true. 

All of a sudden last March, the whole world felt contaminated—every inch of it, causing my cleaning compulsions to become more severe. Obsessions that were once slightly inconvenient started to overtake my life to such an extreme extent that I decided it was easier to avoid leaving the house altogether. 

Feeling unable to control things in my life is what drives my compulsions; the pandemic brought with it a boat load of uncertainty, which left me feeling completely overwhelmed by my surroundings. 

As with most mental health conditions, OCD can be entirely invisible to onlookers. So when I meet up with friends or walk past a stranger in a shop they’re unaware of the fact I may feel like one exposed nerve. 

I had a bad experience last August. After months of rarely leaving the house I plucked up the courage to go out to visit a local supermarket. 

Although I was on complete high alert of everything and everyone around me the trip had been somewhat of a success. However, down the final aisle of the shop a man, without a mask, boorishly knocked past me. 

Without looking back he carried on, leaving me standing there—frozen. 

This rudeness that we have all experienced at one time or another caused me to go into complete panic mode. I left my mom in the shop and made a hasty escape to the car where I broke down and cried. I already knew sitting there that I desperately wanted to wash my hands, get my clothes off, put them in the wash and jump in the shower—once home, that’s exactly what I did.

To another person my reaction may seem irrational. However, for me an obsession, in this case the fear of catching covid, is like an itch. I might decide not to scratch it to avoid making it worse, but, resisting only causes it to demand more of my attention. No matter how hard I try all I can feel is an incessant need to scratch. A scratch, in this case getting clean, is like a compulsion—it provides relief.

It’s low moments like these that encouraged me to finally seek help; for too long I thought my anxieties would simply go away. I found an online cognitive behavioural therapy (CBT) course which was perfect for me at the time. I didn’t have to worry about leaving the house in the height of a pandemic, and I got to choose how much or how little I did with the added encouragement from a mentor when I needed it. I finally gained techniques to help me manage my mental health. Tasks that I couldn’t have imagined myself doing a year ago now feel effortless.


Explaining OCD to others

Trying to help people understand the inner-conflict you, and others living with OCD, face on a daily basis is often difficult, because of false notions generated by the misuse of terminology.

Palav tells me:

“I have always been ashamed of admitting to my OCD although my family knew for a while before I was diagnosed. I find it difficult to share my feelings and experiences around OCD with my friends and my partner.”

Reassuringly, she states further:

“My family and friends are very accommodating to my needs and are constantly looking out for my well-being. And I can’t stress enough how grateful I am for them.”

Williams adds that she finds it easier to share with people; however, the amount of understanding she receives is “very much dependent on the person and situation”. She says, “a lot more acceptance and understanding is needed.”

Opening up about the concerns she’s had about divulging this part of her life Emily says:

“One thing I was always worried about telling people about having OCD was the label. I didn’t want to be diagnosed with OCD and have it be on my records for everyone to see. However, it’s not like that at all you can keep it completely confidential and only have to tell people you are comfortable with telling.”

Personally, the increase in challenges I’ve faced this year has made it harder to mask my anxiety and compulsive behaviour. Something which has encouraged me to set boundaries and not shy away from distancing myself from people who weaken, rather than strengthen, my mental health.

“I didn’t realise it [my anxiety and OCD] was this bad”, is something that someone once said to me. Statements like these reinforce the idea that people should hide their disabilities to avoid facing judgement from others.


Progress is needed

Stereotypes attached to having a mental health diagnosis are also affected by overlapping identity related stereotypes, e.g. sexuality, gender and race. The addition of such, makes it even harder for people to disclose their struggle because of the extra layer of judgement they may face.

All three interviewees expressed a desire to have had the opportunities to learn more about mental health and wellbeing from a younger age. Palav writes:

“My obsessive behaviour began when I was 14 and I was very hard on myself and even put myself down for it. Little did I know that it was a mental health issue that I could get help for. When I was diagnosed, almost 6 years later, everything fell into place. […] If I had more opportunities to learn about OCD from a younger age, I wouldn’t feel so much shame around my obsessions and would probably get help much sooner.”

Emily also expresses the reluctance she felt about telling people and notes how her anxieties caused by OCD made it even harder:

“I have had OCD since I was younger, about 8 years old. I never understood what OCD was but deep down I knew I had it. It was going to be a secret I kept with me my whole life but when it got really bad during lockdown I knew I had to reach out for help. I was so scared of telling people from fear of judgement, OCD can make you feel extremely ashamed and even scared.” 

The English government’s mental health recovery plan, backed by £500 million may bring with it some good news in regards to accessibility of mental health services; however, it’s clear that there’s still a certain level of judgment and shame felt by those living with mental health conditions that’s stopping them from utilising the support on offer.

Around 792 million people live with a mental health disorder globally; whilst talking about mental health may no longer be taboo, the current level of teaching of related topics in schools and in the wider community doesn’t seem sufficient enough to move past this initial point. 

Although it may appear that in recent years, with more investment in mental health services, we have reached a breakthrough for mental wellbeing across the UK, in reality there are still remaining barriers that are stopping people from seeking support. These can only be broken down by increasing people’s awareness of a wide range of mental health conditions, and the fathomable ways they can affect people. Instead of individuals feeling isolated in their experiences, they will be encouraged to speak out.


Progress is needed

A mantra I always say to myself is “thoughts are not facts”, which is actually something I learnt doing CBT. I have come to realise that I may not be able to control the thoughts that pop into my head, but I can control how I react to them.

Emily also passes on some helpful words. She wants people to understand that they’re not alone:

“reaching out for help could change their life for the better! […] there is nothing a counsellor or therapist hasn’t heard before! Whatever you are experiencing someone else has gone through too. I am fortunate enough now to have the knowledge about OCD and techniques to help me move forward in my life, and I no longer feel alone.”

Lastly, Palav neatly affirms that:

“Your obsessions don’t have to become you. You are valid despite your thoughts. You are safe and heard. You matter.”


Progress is needed

Cardiff University’s mental health team offers a wide range of support for people whose lives are impacted by mental health conditions.

A Cardiff University spokesperson wrote to me saying:

“[Their] role is to support students with a long term mental health condition, to look at ways to reduce the impact on study. This will typically include making recommendations and adjustments such as extra time for exams.”

“There are three trained mental health professionals that work in the team (A Mental Health Nurse, Psychotherapist and Occupational Therapist), and as a result we have a good understanding of the nature of OCD and the types of adjustments that could be useful when trying to reduce that impact on study.”

They also strongly encouraged anyone with a mental health condition to have a look at their website page where you can find their contact details and more information about how to access the right support.

Young Minds also has a helpful page full of tips for coping with OCD during a pandemic here. 

If you are struggling with or think you may have OCD or another mental health condition, get in touch with your GP or a trained mental health professional in order to receive the right help and support for you.

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