Loneliness Experiences of People with Facial Differences during the COVID-19 Pandemic

How does facial difference interact with experiences of loneliness? Already the subject of significant discussion, loneliness has become an even more pressing topic during the COVID-19 pandemic, as we navigate unprecedented periods of separation and isolation. Critically, people with disabilities have generally been ignored in the international debate about loneliness. Our normal social interactions have been altered, our usual support networks disrupted. Our homes have become our workplaces, gyms, schools, as well as pubs and restaurants. While no two experiences of lockdown are the same, many people have expressed pervasive feelings of loneliness as they have adjusted to each subsequent phase of restriction on social activities.

But loneliness is not always a negative experience, as highlighted in AboutFace PI Fay Bound Alberti’s recent Biography of Loneliness. Many have expressed comfort, relief, and contentment during periods of lockdown. Charities like Face Equality International and Changing Faces, which support people living with facial differences, have reported that some of their service users have found social distancing, and particularly mask wearing, to be comforting. Others have said that the removal of their usual social and institutional support networks has been incredibly difficult to cope with. Video calls pose their own challenges, as not all video conferencing platforms offer the option to ‘hide self view,’ meaning that people with facial differences are constantly seeing themselves in mirror image while on calls. These experiences vary from person to person, and are not solely governed by the severity of the facial difference nor the perceived ‘resilience’ of the individual. 

The variety of responses to the various stages of lockdown started us thinking about the particular experiences of people living with facial differences. Lived experience is essential to AboutFace. We recognise it as a form of expertise, one that is invaluable in our wider research. In particular, we want to acknowledge those whose experiences have previously been marginalised or their voices silenced in medical or historical settings. This is key to our research on face transplants, where there has to date been no attempt to understand the experience of the procedure from the point of view of the recipient. Our research on the emotional and cultural history of face transplants necessarily considers the wider experiences of the facial difference community. 

In order to guide our research, we draw from the extensive expertise of our Lived Experience Advisory Panel (LEAP), which is made up of individuals with facial difference who are specialists in areas such as research practice, evaluation, patient participation and involvement, disability rights and advocacy. This group has directly informed the questions that we ask in the survey, which has been developed in collaboration with Dr Kathleen Bogart, a psychologist at Oregon State University who specialises in ablelism and rare facial disorders, and sits as the chair of our LEAP. By hearing from people with visible differences we will focus on collecting memories, opinions, thoughts and feelings, outside of existing medical or psychological frameworks for assessing people’s experiences. Our aim is to listen, reflect and consider individual narratives.

Our survey seeks to explore the relationship between loneliness and facial difference during the various periods of lockdown during the COVID-19 pandemic. It is our hope that the results of the survey will enable us to better understand the experiences of people with visible facial differences, and what support might be beneficial to them as restrictions ease. The survey is open to everyone with a visible facial difference, over the age of 18, who is able to communicate in English. We are interested in hearing from anyone who meets these criteria, whether they are based in the UK or further afield. You can take part by following this link.

Dr Sarah Hall is the Public Engagement and Events Officer for the AboutFace project. She is a strong believer in the benefits of interdisciplinary research and in promoting genuine knowledge exchange between public audiences and academic researchers. Sarah is also a historian of seventeenth century puritanism; her research interests lie in correspondence, lived experience, community, and social networks.