Stigma: A vicious circle of burden for sufferers
The experience of people suffering from irritable bowel syndrome (IBS) is often fraught with stigma, confusion, embarrassment, belittlement, and loneliness. Cerner Enviza conducted qualitative research with IBS sufferers in UK, US, Germany and China to learn more about the experiences of living with IBS.
There are a multitude of health conditions where stigma plays a role. Sufferers may feel a sense of shame which impacts behavior, meaning that stigmatized conditions are often kept hidden from others. These conditions may be under-diagnosed and undertreated, creating a vicious circle of burden for sufferers.
In order to understand more about hidden conditions, we need to get closer to the experience of sufferers.
The experience of people suffering from irritable bowel syndrome (IBS) is often fraught with stigma, confusion, embarrassment, belittlement, and loneliness. The physical, practical, and emotional impact of the condition is clear. One study found that IBS sufferers would give up 10-15 years of their life expectancy for an immediate cure.i
In spite of this impact, IBS is a condition that often stays hidden, allowing for a continued lack of awareness and quality treatment. It is estimated that only 10-25% of all people with symptoms consistent with IBS seek medical care. ii
Cerner Enviza conducted qualitative research with IBS sufferers in UK, US, Germany and China to learn more about the experiences of living with IBS.iii As part of this, participants were asked to write a letter to their IBS as they would do to a person. All letters started with the words ‘Dear IBS…’. They were asked to write this on their own, in their own time, in their own words. They could write from a word to several pages, they were not restricted in any way. This is a powerful, evocative technique for eliciting hidden meanings and emotions.iv
Responses highlighted consistent themes apparent in the lived experience of IBS sufferers.
The unpredictability of IBS symptoms is one of the greatest factors impacting sufferers. The inability to plan for episodes of symptoms and the anticipation of potential embarrassment leads to anxiety and often isolation:
“I have not had a date since 2002 because I just cannot face the embarrassment of having to spend the night in the loo. How do I explain to a potential boyfriend that the minute I get stressed or anxious or eat high fat content food I MAY have to use the bathroom?” – IBS sufferer, UK
“When I am home I can control you at my place. I can't control you when I visit, go out socially, dine out, work out, and the list goes on. Your timing sucks. It's always at an inconvenient moment” – IBS sufferer, US
“I would like one thing from you above all: now that I've accepted that you are here to stay and will always constrain me, you could at least be a bit more predictable. Then I would be more able to make plans and not suddenly be cruelly set back” – IBS sufferer, Germany
“The way you behave is so unpredictable and irrational […], your actions can really, deeply hurt me sometimes” – IBS sufferer, UK
The condition is a constant presence in the minds of sufferers. The psychological and physical burden is wearying:
“You take the fun out of everything” – IBS sufferer, Germany
“Hi, the God of Death for my intestines. Your arrival has made me miserable. I can't eat whatever I want, play as I will. My tummy is constantly making noise every day, you don't even let me digest my vegetables properly. You make me exhausted and lose interest in all things. You are like a nightmare on repeat” – IBS sufferer, China
Many were angry…
“I drank fluids hoping that you would realize that you cannot swim and would bother someone else. How dare you look me in the eye and walk away and not listen to me. Pack your bags, it’s time to leave” – IBS sufferer, US
“Miss Trouble, you always bring all sorts of problems to bother me, I cannot be any more annoyed” – IBS sufferer, China
“Dear IBS, YOU SUCK!” – IBS sufferer, US
…and questioned the unfairness of the condition, citing the emotional as well as the physical impact on their lives
“I'm the person you have inflicted with this condition. I'm the host that you’ve inflicted your misery on and that you've caused a great deal of anxiety and embarrassment to. I'm the person you've chosen, so why me? I want to hold you accountable.” – IBS sufferer, UK
But while some were braced for battle:
“I won't let you get me down. You're picking on the wrong person if you're trying to wear me down, I'll fight back and I'll find a way to get you out of my life for good! I'm no pushover so I hope you know what you've let yourself in for!” – IBS sufferer, UK
Others had reached acceptance (or perhaps defeat), wanting to find ways to work together:
“I want to understand you. I want to help you. I want to avoid the things that aggravate you, I want to avoid the things that upset you because if I don't, you take your feeling out on me and I suffer. I've realized I have to work with you in order for us to move forward. What are your triggers? Can you let me know what your pet hate is? I'll do my very best to avoid it. You have my commitment on that. I want you to understand what it's like for me. The affect this has on my daily life. I don't like it, I don't need it and I don't deserve it. Let's work together from now on” – IBS sufferer, UK
The sense of stigma felt by sufferers is compounded by socio-cultural attitudes to the condition which discourage discussion. It’s not a ‘pretty’ condition. Many suffers say they avoid mentioning it. They don’t talk about it even to close friends and family:
“I’ve never heard anyone talking about it and never met anyone with it. I never bring it up or say anything. I don’t like to talk about it with anyone, so most people don’t know, and those that do don’t go there” – IBS sufferer, US
“I feel that I'm a weirdo. Because I'm the only one that has this disease in my friend circle. Some people don't know what it is, so out of fear, they distance themselves from me” – IBS sufferer, China
IBS sufferers are held hostage to the unpredictable nature of their condition, despite their best efforts to identify triggers and apply control. The sense of isolation due to perceived stigma associated with the condition is created in part by a disconnect between the actual impact on life, and the broader cultural perceptions of the condition. As these feelings are internalized it exacerbates the negative effect of the condition, creating a vicious cycle.
By deepening our understanding of the experiences of stigmatized conditions like IBS we can educate others, challenge the social narrative, improve conversations and provide more connection points for support and services.
Cerner Enviza has developed a proprietary Health Stigmatization Model to predict likelihood of diagnosis and treatment for any stigmatized condition, and the factors influencing this, encompassing:
- Aspects of the condition itself
- Patient psychology
- Healthcare professional psychology
- National/regional factors
To find out more about our work in stigmatized conditions, pleasecontact us.
(i) Canavan C, West J, Card T. The epidemiology of irritable bowel syndrome. Clin Epidemiol. 2014 Feb 4;6:71-80. doi: 10.2147/CLEP.S40245. PMID: 24523597; PMCID: PMC3921083
(ii) Inadomi, J.M., Fennerty, M.B. and Bjorkman, D. (2003), The economic impact of irritable bowel syndrome. Alimentary Pharmacology & Therapeutics, 18: 671-682.https://doi.org/10.1046/j.1365-2036.2003.t01-1-01736.x
(iii) Cerner Enviza unpublished data
(iv) Tan J, Chavda R, Leclerc M, Dréno B. Projective Personification Approach to the Experience of People With Acne and Acne Scarring—Expressing the Unspoken. JAMA Dermatol. 2022;158(9):1005–1012. doi:10.1001/jamadermatol.2022.2742