Inflammatory Bowel Disease and COVID-19: experiences of those well versed in social distancing | Poppy Budworth.
The global outbreak of Coronavirus has prompted important questions around the impact of isolation on people’s mental and physical health, interactions with the environment, their relationships, work life and social life. The words ‘social distancing’ have echoed in many of our minds over the last few months, shaping the everyday practices and urban encounters for the whole UK population. But for a large proportion of people living with active Inflammatory Bowel Disease (IBD), physical distancing, staying at home, and avoiding social contact is already a big part of everyday life. The taboo subject of toilet trouble, the embarrassment around smells and sounds, the urgency of bowel movements and the chronic pain and fatigue, often orients the lives of those living with the disease.
IBD, also known as Crohn’s or Ulcerative Colitis, is an autoimmune disease affecting various parts of the digestive system from the small intestine to the rectum. There are a number of different symptoms associated with IBD, including stomach pain, the passing of blood and mucus, uncontrollable bowel movements and extreme fatigue. With around 300,000 people in the UK living with IBD, it is important to recognise the various ways in which Coronavirus has impacted people’s emotional and physical wellbeing, as well as acknowledging how discussions around isolation and vulnerability have the potential to create positive, long term change for those living with chronic illnesses. For the majority of the population, the end of lockdown will signal a return to normality, but what does this mean for those who distance themselves regardless of a global pandemic, and how can we create a ‘new normal’?
Living with IBD
Living with IBD and avoiding coronavirus has created an emotional and physical paradox. Those diagnosed with IBD, who are either managing their disease, receiving treatment, or awaiting/recovering from surgery, will have received a letter or text regarding their risk level of catching and recovering from Coronavirus. With low and moderate risk groups being told to practice stronger social distancing, and the most vulnerable groups being told to practice the strongest level of isolation known as ‘shielding’, the simple categorisation of one’s body can induce various feelings and worries and impracticalities. According to NHS guidelines, the term ‘shielding’ is used as a measure to protect extremely vulnerable people through the minimisation of interactions with others. Throughout the Coronavirus outbreak, the NHS and UK government have strongly advised those identified as high risk to shield, meaning they should stay at home and minimise all non-essential contact with members of their household.
But for many, the practicalities of isolating from your family is almost impossible. Firstly, people who live with IBD still have the same responsibilities as those who do not; they are mothers and fathers, sons and daughters, brothers and sisters, carers, students, friends, health care professionals, key workers, and much more; they are everyone of us. Considering this, many people are unable to follow the strict guidelines they have been recommended. Moreover, the inability to follow such guidelines also reflects the social differences across the country, which are often reproduced by the spatial and relational limitations which come with IBD. For example, the experiences of those still visiting hospitals will vary significantly between those living in urban and sub-urban areas compared to rural, those with access to cars compared to those that rely on public transport links which are now deemed unsafe. The lack of guidance on how to mitigate against the consequences of having to carry on with normal life, and the self-responsibilisation of one’s health, demonstrates the multi-pronged burden of being chronically ill during a global pandemic.
In many high risk IBD cases, patients are often undergoing biologic or immunosuppressant treatment and need regular tests to ensure the safety and sustainability of their medication. In essence, a number of people with compromised immune systems are simultaneously told to avoid ANY contact, even with family members, and to continue with their IBD treatment in hospitals and doctors’ surgeries. The consequences of trying to negotiate between staying safe and tackling their illness can create an enormous amount of stress and anxiety for the individual and their family; making an often isolating situation even more difficult.
As well as those deemed high risk, there are people who are managing their disease, or who are in remission, who have been characterised as ‘vulnerable’ and ‘at risk’ by post or text. This can prove to be an extremely confusing time for people, as it can bring to the surface the struggle between how people feel in themselves, how they look on the outside to others, what’s happening on the inside, and what they are being told by a healthcare professional. This, combined with the avoidance of face-to-face contact and counsel, can be very frustrating. The conflict between the internal/external experiences of the body, as well as what’s visible/invisible to others, raises an important discussion about the role of our bodies in our experiences, perception, our identity and our relationships. Once again, the necessity of a reliable and familiar body in today’s fast paced world has been re-affirmed, raising questions about how society works to include, and exclude certain bodies and behaviours.
Social vs physical distancing
As mentioned, the term ‘social distancing’ is both representative of, and problematic for, many people tackling IBD symptoms. Although chronic illnesses can result in many people avoiding social situations, virtual space and communication has shown to be of key importance for many living with IBD. With Facebook support groups and Instagram public figures with large followings (for example @crohns.mummy, @thegrumblinggut, @amberostomy) showing the highs and lows of living with IBD, there is a clear difference between physical distancing and social distancing. The close-knit virtual communities highlight the varying experiences of IBD, sharing personal experiences of those who live day to day with minimal health concerns as well as those who experience chronic pain and fatigue. Charities such as #GetYourBellyOut and Crohn’s and Colitis UK continually reiterate the importance of sharing stories, and this has prevailed during the last few months. Although each IBD story is different, what the online community demonstrates is the mutual respect for tackling the disease together, how to adapt, be resilient and create a ‘new normal’ for yourself and your family. What’s significant here is the emphasis on each persons’ experience of IBD being different, which contrasts significantly to the impersonalised, an often contradicting advice people have received through letters and texts.
It is important to recognise that as well as playing a positive role in people’s life, social media can also work to isolate and demean those living with a chronic illness such as IBD. Across Instagram, Facebook and Twitter there is a constant feed of hashtags, trends and challenges which can reaffirm the unreliable, and less-than-ideal body many IBD suffers feel they live with. For example, popular influencers posting about their lockdown health kicks, or home exercise regimes, as well as friends and families running 5km’s for charity or sharing their travel pictures online. This again allows for a divide between those bodies that are able, and those that are not.
Coronavirus has created an enormous amount of anxiety for people all over the world. Whether you are a parent, a carer, a student, a healthcare professional, everyone is feeling the worry and pain induced by the Coronavirus outbreak. But for those living with IBD, the events of the last few months have both heightened, and entrenched the stresses and impacts of living with a chronic illness. The discussions surrounding social distancing and mental health issues raise fundamental questions about how we protect people who come into contact with isolation and vulnerability on a day to day basis. Developing a society with caring infrastructures to protect those with bodies who deviate, will be fundamental to the ‘new normal’ post-COVID19. This requires greater flexibility, social cohesion and more nuanced urban policies, which together recognise the complexities of living with chronic diseases.
Poppy Budworth, May 2020.