Why self-isolation is normal for me and many others

I was diagnosed with Cystic Fibrosis at 6 weeks old, and over the years I have had numerous cold and viruses which have caused lung scarring and consequently the loss of critical lung capacity. Cystic Fibrosis causes thick sticky mucus to build up throughout the body, and most importantly in the lungs, which traps and incubates infection - invariably leading to long term lung damage. I dread the winter season as it brings coughs, colds and the flu virus into our shared environment and presents an immediate and permanent threat to my health.

What for most people is a minor cough or cold, is far more threatening for me, as every virus I catch has the potential to leave me with sustained and irreversible lung damage. I am 24 years old, and now only have 55% of my lungs functioning.

I am very used to self-isolating when I feel at risk from others, even when I am not ill. I will avoid seeing friends or family if I know someone is unwell and I avoid the office if someone reports they have been ill. I hold my breath when someone coughs or sneezes on public transport and my hand sanitiser is always close by. Whilst I may look like a healthy person on the outside, on the inside I look and feel very different, and I am not alone. Indeed, about 15 million people in the UK are living with a long term health condition.

Whilst working at The Scar Free Foundation, it has become clear that my fears are shared by some of those who have experienced a traumatic injury – such as a burn or conflict wound. Trauma can cause temporary immunosuppression, and any injury to the skin causes a breach in our natural barriers, leading to a heightened risk of infection during the healing period.

Moreover, whilst self-isolation is the new norm for many during the COVID-19 pandemic, it is also a reluctant choice for some who have experienced a visible change to their appearance following an injury. Indeed, a survey we conducted last year showed that, out of 1,000 respondents (aged 16 years old and over), close to a quarter (23%) said that scars had caused short term emotional or physical problems. A further 14% have suffered from long term emotional or physical problems due to scarring (Census wide poll of 1,000 UK respondents (16+) September 2019).

Professor Diana Harcourt (Professor of Appearance and Health Psychology at the Centre for Appearance Research at the University of the West of England, Bristol) confirms there is a body of research evidence suggesting that some people with visible differences do report issues, such as anxiety about social situations and may worry about the reactions of other people. This can sometimes result in social avoidance. However, she emphasises that not everyone is equally affected and it’s important for researchers and clinicians to learn from those who do manage the challenges they face well, in order to provide effective support and intervention for those who are struggling.

Lois Collier, Founder of Scar Family (@scarfamily), reiterated the fact that self-isolation was her reality following her injury, saying that "when I first got the scar on my face, I would make excuses not to go out, as it was easier to stay inside and not have to replay what happened to me, or answer strangers questions about how I got my scar. To avoid the emotional torment and questions, I found home was the most comfortable place".

Daniel Jackson reiterated this point, saying ‘the COVID-19 virus has, in part, created an isolated world which I, and others like myself, already existed in. Too scared to go outside, because of the fear of the unknown. Not wanting to socialise because it’s safer to stay home. However, now, we are separated from our loved ones too; the people who still see you as you’. Indeed, Dan highlighted that, now, with the strict isolation rules, he ‘feels more alone than ever’.

Moreover, India Gale told us how ‘during numerous surgeries I have had many long periods where I was house-bound, and I know difficult isolation can be. You can feel helpless at times, needing to rely on others to assist you and sort your essentials, something which more people than ever now face in this pandemic’.

There is no doubt that the 2020 pandemic will have significant societal ramifications; both negative and positive. However, I believe a positive outcome will be that people may have increased awareness about the risk they present when they feel unwell to vulnerable people, such as those with chronic illness and increased infection risk following injury. People may also become more empathetic after having experienced isolation for themselves.

As the restrictions are slowly relaxed, many people will be able to once again connect with family and friends, and return to work in a ‘new normal’. However, this will not be the case for some. The pandemic has highlighted how many people are defined as vulnerable to infection. Self-isolation has challenged us all in so many ways, but we must also acknowledge how many people are forced to self-isolate as a result of life changing events or illness. For these people, being deprived of the outdoors, of community contact and a sense of freedom is a way of life, not a short term imposition. Let’s hope that one positive outcome of this pandemic is an increased understanding of the burden of chronic health issues and empathy for those for whom pandemic conditions will continue long after this current disease has passed.