"But You Don’t Look Ill" – A Research Project on Social Stigma & Inflammatory Bowel Disease (IBD)

Please tell us a bit about yourself and your research

My name is Sylvia, and I am a graduate of the Visual Sociology Masters programme at Goldsmiths, University of London.

If seeing is believing, how do we encounter the invisibilities of other people’s experiences?

My dissertation research project “But You Don’t Look Ill” explores different aspects of stigma through the experiences of five women from different parts of England who are living with IBD. Through participatory and visual methods, we went beyond the conventional narratives around the physical and medical aspects of IBD, into the consequences that the illness has on one’s social life.   

The research findings show that women in England with IBD are likely to experience some social stigma following their diagnosis. The invisibility of the condition may lead the affected individual to question her identity, or to exclude herself from social interactions. Increased awareness and education on IBD could help minimise the occurrence of stigma. Although these findings cannot represent the whole population, they do provide some insight that could lead to further exploration of the topic. 

What made you interested in Inflammatory Bowel Disease (IBD) research and/or research into social stigma in particular?

There are two people in my close circle with Ulcerative Colitis (UC), so over the years I got to know first-hand some of the hurdles they face. In 2018, I was also diagnosed with UC and since then I have met many people with IBD.

As many of you  would know, there is still a lot of stigma around showing large abdominal scars (i.e. in a bathing suit), or having an ostomy bag – something that can affect people’s self-esteem and willingness to participate in social activities. In conjunction with this, lack of awareness of these diseases makes practical aspects, such as using toilet facilities urgently and multiple times, more difficult to deal with. 

I wanted to delve deeper into how social stigma affects us and to share my research results in a way that is accessible to the public beyond the academic community. 

What have you learnt from your research about life with Crohn’s and Colitis?

My research confirmed many things I already knew about being diagnosed and living with Crohn’s or Colitis. For example, we tend to put a lot of trust in our doctors and IBD team, but it is equally important to build a support network of friends and family, or fellow spoonies. Also, it is proven that lives can be improved through awareness of what Inflammatory Bowel Disease is and how Crohn’s and Colitis affect an individual’s life.

I truly cannot stress enough how important it is to talk about the things that we deal with on a daily basis, and to let the people in our support network talk about those things for us when we’re just too tired to do it.

The main findings of my research, and the ones that were represented in my immersive installation (a creative way of bringing findings to life, that people could walk around and explore), were: identity and how we come to question it after our diagnosis; how the invisibility of IBD creates disbelief in others; and that mass awareness and formal education can help minimise social stigma.

What sort of responses did you get to your visual installation?

For the purposes of my dissertation, I created two different versions of a visual installation, informed by participatory research. One version was an on-site installation in the form of a spatial intervention, meaning that I took over existing toilet facilities and added elements that showed the results of my research. The other version was an installation in an exhibition space, created from scratch, to encompass the results of my research in a visual, immersive way.

In this link you can see a first-person tour of the installation in an existing toilet facility: https://youtu.be/VWfDNgk-ph8

In this link you can see a first-person tour of the constructed installation within an exhibition setting: https://youtu.be/LxdEa6ZzV50

There was a wide variety of responses to both versions of the installation. Most visitors were curious and had questions about IBD and how it is different from IBS. Some visitors were reluctant to enter the stall and close the door, while others went in, sat down, and spent quite a bit of time reading the quotes on the walls. One visitor, who has been living with UC, was quite emotional when she came out of the installation, saying that she saw herself reflected in many of the quotes. 

What are your plans for the future?

Currently, I’m looking for spaces in which my work could be installed in order to provide an immersive experience that educates the audience, or at least gives them an excuse to start a conversation. I am also thinking about ways in which to expand my research. It would be interesting to repeat it with a different set of participants. I wonder what the results would be if I worked with participants who had undergone surgery and had a colostomy, or how responses may differ if the geographical limits went beyond England to the entire UK, or even to different countries.

My research would not have been possible without the support of Crohn’s & Colitis UK in the participant recruitment stage, and I am immensely grateful to the organization.

If you are interested in reading my research paper, I assure you that it is written in non-academic language and it is supplemented with photos to make reading more relatable and enjoyable. You can view it here: https://issuu.com/sylvia.kouveli/docs/shareablecopy_butyoudontlookill