Pathways Plus Projects blog - Josie Millar

Exploring the effects of loneliness and social isolation on experiences of recovery and relapse in Obsessive Compulsive Disorder

So, what is OCD?

People with OCD experience unwanted, persistent thoughts, images or doubts, known as obsessions. These obsessions are usually about being responsible for harm coming to themselves or others and cause huge distress and anxiety. In response to these obsessions the sufferer will do things (either in their mind or their environment) in order to prevent the perceived threat/ harm from occurring. These actions are known as compulsions and are carried out to help keep the person safe, but instead they become a part of the problem.

“I just feel embarrassed by it [OCD] because people don’t really understand it…. or they joke about it or say they’re ‘OCD’ because they like to keep things clean and it’s not that at all”. 
“There are so many things that I want to do, that I cannot do, like going out to my friends. I spend most of my time in the house…repeating things that I don’t have be doing”.
“It felt like a big black cloud over me constantly. The thoughts were so intrusive, I had no control over them at all for a long time…It was really lonely and upsetting because nobody seemed to understand what I was going through”.

Obsessive Compulsive Disorder (OCD) is often misunderstood as something “we all have a bit of”, but this could not be further from the truth. The quotes above are from people who took part in our research. Our research aimed to gain an in-depth understanding of how social isolation and loneliness impacts on people with OCD, especially when they are recovering from OCD or/ and when they have experienced a relapse.

We had three questions that we wanted our research to answer:

  1. What is the relationship between OCD and experiences of loneliness and social isolation?
  2. How do experiences of loneliness and or social isolation become more salient in the context of recovery and/or relapse?
  3. How is increased social connection related to experiences of recovery from OCD?

What did taking part in our study involve?

Who took part?

A total of N = 23 participants took part in our research. All of the participants were;

  • adults (aged 18+ years)
  • self-identified as having OCD and met OCD diagnostic criteria
  • identified having the experience of improving or recovering from OCD, but also experiencing a relapse.

 Participants were recruited via advertisements on UK OCD charity websites and social media outlets.

What did participants do?

Potential participants first read an information sheet that explained the study. After reading this, if they wished to take part, they completed a consent form. Participants then completed some questionnaires about their demographics and current symptoms. This was done via a secure online portal.  Eligible participants were then invited to take part in a telephone interview about their experience of OCD in relation to loneliness and social isolation and in relation to recovery and relapse. The interviews were recorded using a dictaphone and transcribed verbatim. We used a qualitative process called Reflexive Thematic Analysis (RTA) to analyse the transcripts of the interviews.

What we found: results

  1. The relationship between OCD and experiences of loneliness and social isolation

“I think OCD is quite isolating because you can’t do normal interaction.  Everything is an effort; everything becomes hard work.”

OCD often involves strictly adhering to specific and extremely time-consuming routines and rituals. Over time these become increasingly more complex and time consuming. OCD creeps into all aspects of one’s life. It squeezes out ‘normal’ everyday, enjoyable, pleasurable and meaningful activities as well as social contacts.  

OCD often prevents individuals from working. For those who are able to maintain work the rituals, routines and rules involved, can be so time consuming and exhausting that little time or energy is left for anything else. Other ‘basic’ parts of life become extremely difficult or not possible at all. These often include; shopping for basic supplies, preparing or eating food, exercise, education, seeing friends and family, caring for loved ones or attending to important relationships. As the fundamentals in life are hugely impacted, life ‘shrinks’ to the bare minimum and OCD takes over becoming all-consuming. Social connections are lost or not build, and feelings of loneliness and social isolation is experienced.

  1. How experiences of loneliness and or social isolation become more salient in the context of recovery and/or relapse

           “I haven’t been outside; I’ve been isolated from everybody. I haven’t been able to see what life is like. My OCD is telling me what life is like”.

When an individual strives to overcome their OCD, there is often little support from others, due to how socially isolating the experience of OCD has been, up until this point. For many years or decades, it may have been too difficult to allow others into their home and/or to visit others or public places. Life before accessing help is often “a case of existing, not in any way living”. This means support from and contact with others, is often very limited and minimal.

When progress is made in therapy, one begins to reclaim their life from OCD and take back some of the hours that would have otherwise been lost to OCD. On beginning to do this the huge vacuum of time as well as dearth of meaningful activities and social relationships becomes salient. It is very important that the individuals newfound time be filled with meaningful experiences for them. However, this is often much easier said, than done. For individuals who have experienced OCD for years or decades they had completely lost sight of their interests or hobbies, the things they used to find pleasurable, socialising with friends – having friends or family to socialise with. Therefore, support to reengage and to discover/ rediscover a ‘life worth living’ can be vital for preventing relapse and maintaining motivation and resolve. However, this focus on rebuilding is not always included as a standard part of Cognitive Behavioural Therapy (CBT) for OCD.  

When rebuilding doesn’t happen, the opportunity for OCD to ‘sneak’ back in arises. OCD is an insidious disorder, it will allow the individual to justify allowing a compulsion or ritual back in, which at that point may have felt somewhat optional, but quickly becomes non-negotiable. This is a slippery slope, as the obsessions, rituals, compulsions and rules expand again and become harder to challenge and resist. Thus, making relapse more likely.

  1. The relationship between increased social connection and experiences of recovery from OCD

“Coming out as an OCD sufferer has socially isolated me in various ways. The loneliness has been very rough”.

Central to treatment and recovery is challenging oneself to do the difficult and scary work of facing and challenging ones worst fears and testing out what happens. Recovery is extremely challenging, and it is recognised by those in the process of recovery that it often requires – or would greatly benefit from – the support and encouragement of others. This social connection is wanted and the value of such is recognised. However, as mentioned such support networks and relationships are often not in place. Thus, the challenge of recovery is added to by the additional challenge of building social connections.

Emerging from a life that has been ruled by OCD is often accompanied by strong feelings of shame and embarrassment, coupled with stigma, which has often become internalised. Re-entering and engaging fully with life can be hampered by the difficulty of trying to explain  the ‘lost years’ (or decades), when individuals were not in employment (skills and relevant experience have often moved on), did not have relationships, missed out on having children, were not financially independent etc. Individuals fear judgement and assumptions from people they meet in both employment and social circumstances.

Feeling “understood” is pertinent to recovery and talking to and linking with others who have shared experiences of OCD is recognised as a valuable first step in reconnecting socially. Social connection is perceived to have an important role in helping to maintain treatment gains and enhance recovery. However, intervention is required to support this. Such interventions would ideally form a part of standard treatment and would also be useful post treatment, particularly if delivered in a group format.

Blog Authors: Dr Josie Millar and Ms Lucy Clarkson – Collaborator with lived experience

Research team: Dr Josie Millar, Ms Lucy Clarkson, Mr Ashley Fulwood, Dr Erin Waites & Professor Julie Barnett

 This project was funded by the Loneliness & Social Isolation in Mental Health Research Network, which is funded by UK Research and Innovation and their support is gratefully acknowledged. Any views expressed here are those of the project investigators and do not necessarily represent the views of the Loneliness & Social Isolation in Mental Health Research Network or UKRI.