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Covid-19 and OCD: Briefing Note

This document is intended to provide background and reference material for non-clinical professionals such as GPs or journalists. Any part of it may be quoted directly, attributed appropriately to OCD Action. If you would like more information or have specific queries, please email the Communications Office at media@ocdaction.org.uk.

 

What is Obsessive Compulsive Disorder?

Obsessive Compulsive Disorder (OCD) is defined by a cycle of intense anxiety. Someone who lives with OCD experiences obsessive worries, which they respond to with compulsive, repetitive behaviours to try to manage them. What the worries are centred around, and what behaviours the person engages in, can vary greatly from person to person, but they are usually focused on feelings of danger, doubt, or responsibility.

How has the Covid-19 pandemic impacted people with OCD?

As well as experiencing the same impact faced by all people across the world, the pandemic has exacerbated the symptoms and isolation experienced by many people with OCD, while limiting their access to support. The increased sense of alarm and the focus on keeping safe have been triggering for some individuals. Many also found that their obsessions became focused on pandemic-related topics such as contamination or the endangerment of others. A survey of people calling us in the second half of 2020 found that 80% have found their symptoms and quality of life have worsened due to the pandemic, and almost all of these reported experiencing new intrusive thoughts because of it.

Are people with OCD just worried about germs?

No. About a third of people with OCD have concerns around germs and contamination, and for many of them those obsessions have been worse during the pandemic, though some have also voiced that not much has changed for them, as the current situation simply reflects their usual fears. OCD can bring on obsessive worries about any topic, though, and experiences of people with OCD during this period include finding themselves stuck on worrying about keeping vulnerable loved ones safe, infecting others just by thinking of or looking at them (sometimes called ‘magical thinking’), harming their family while in lockdown, or being a bad person because they are not finding the lockdown as distressing as others (Jassi, Shahriyarmolki and Taylor et al., 2020).

Has the Covid-19 pandemic made it worse for all people with OCD?

As with wider society, the pandemic has had different impacts on different members of the OCD community depending on their personal situation. For some, the slower pace and lower pressure of day-to-day life has been a relief. However, experts warn that this is unlikely to be positive in the long run – avoidance of feared situations and seeking reassurance from people in the home are both common compulsions and can increase the OCD cycle (Jassi et al., 2020).

On the other hand, for many people with OCD the lockdown has greatly increased their isolation and time to think, while simultaneously reducing their access to support and activities. The disruption to routine can leave a void for the OCD to fill, which can exacerbate symptoms and distress.

What has been the effect on the wider OCD community?

It has been a difficult time not just for people with OCD, but also for their carers and loved ones. Many have contacted OCD Action about their loved one’s symptoms getting worse, and the increased isolation, feelings of powerlessness, and involvement in rituals that they are experiencing as a result. Young people in particular are facing challenges due to school closures which have disrupted their routines and support networks. OCD Youth, our young people’s service, saw demand for the helpline increase by 107% in the first lockdown, with similar increases in the 2nd and 3rd.

Likewise, our support groups, forums, and helpline are engaging with more people than ever. OCD Action has seen membership of our online & phone groups more than triple over the pandemic and we have increased the number of groups from 15 to 50 to accommodate the increased membership. The helpline has seen a similarly significant increase in calls and emails, which started in early 2020 and has remained constant since.

How has the pandemic affected access to treatment for people with OCD?

Reduced access to in-person appointments has had a significant impact on the ability of people with OCD to secure the support they need. Almost half of the individuals who contacted the OCD Action helpline during the first lockdown mentioned the challenges they faced due to their therapy becoming remote or being put on hold.

Cognitive Behavioural Therapy (CBT) with Exposure Response Prevention (ERP), which is the only clinically recommended therapy for OCD, can be successfully delivered remotely as well as in-person, but this is not necessarily the right choice or an accessible option for all people with OCD (Jassi et al., 2020). In addition, a key element of ERP is exposure tasks, in which a person conducts tasks that trigger anxiety in order to practice a new reaction without compulsions. For many people taking part in therapy, there has been significant limitation as to what they can do as part of their ERP, especially if their fears revolve around contamination. A third of the people who completed our support survey said that they have been finding exposures more difficult during the pandemic.

Will it all go away when the pandemic is over?

OCD is driven by doubt and uncertainty, which has been a defining feature of the pandemic throughout. In response to our survey, many people with OCD said that they are worried about what a post-pandemic future will look like for them. Because of the irrational and persistent nature of OCD, many expect that the intrusive thoughts they have developed during the pandemic will stay with them for a long time. As a result, they are worried about being left behind as the rest of the world moves on to a ‘new normal’. Research also suggests that, due to the nature of OCD, the emotional and mental health impact of COVID-19 will stay with people with OCD for far longer than they will for the wider population (Fineberg, Van Ameringen and Drummond et al, 2020).

There are concerns beyond the nature of the condition itself. Along with all other NHS users, there will be an ongoing impact in the availability of treatment for people with OCD in the months and years after the pandemic, as waiting lists for mental health services in many areas have become backed up in this time. Many also have concerns that, as restrictions ease in a more permanent way, life might become overwhelmingly quick, complex, and demanding once more.

 

 

Fineberg, N A, Van Ameringen, M, Drummond, L, Hollander, E, Stein, D J, Geller, D, Walitza, S, Pallanti, S, Pellegrini, L, Zohar, J, Rodriguez, C I, Menchon, J M, Morgado, P, Mpavaenda, D, Fontenelle, L F, Feusner, J D, Grassi, G, Lochner, C, Veltman, D J, Sireau, N, Carmi, L, Adam, D, Nicolini, H, and Dell’Ossoaf, B (2020). ‘How to manage obsessive-compulsive disorder (OCD) under COVID-19: A clinician’s guide from the International College of Obsessive Compulsive Spectrum Disorders (ICOCS) and the Obsessive-Compulsive and Related Disorders Research Network (OCRN) of the European College of Neuropsychopharmacology’, Comprehensive Psychiatry, 100(152174).

Jassi, A, Shahriyarmolki, K, Taylor, T, Peile, L, Challacombe, F, Clark, B, and Veale, D (2020) ‘OCD and COVID-19: a new frontier’, the Cognitive Behaviour Therapist, 13.

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