Today’s topic is something I have been wanting to write about for some time…understanding stigma associated with irritable bowel syndrome (IBS).
The Merriam-Webster dictionary describes stigma as: a mark of shame or discredit.
To be honest, I am not a fan of the terms associated with the diagnosis: irritable bowel syndrome. From my experience, people tend to avoid saying they have irritable bowel syndrome. This may be for a number of reasons, including stigma. To me, the name alone can discredit or minimize the lived experience of this disorder. In my opinion, the word “irritable” minimizes the significant nature of this often debilitating condition. Bowel is not a user friendly word as it is most commonly used in the term ‘bowel movement’. In America, poop talk is becoming a bit more socially acceptable, but we have a way to go! The term syndrome–reflects that it is not “one disorder” but covers a spectrum of different conditions (which is true) but the term syndrome also can feel like a catch-all diagnosis.
How do you feel about the term Irritable Bowel Syndrome? If you could name IBS another name, what would it be?
I would like to use medical terms like -algia which means pain. For instance, myalgia is muscle pain and arthralgia is joint pain. Since pain is a key component of IBS, how about colonalgia disorder?
Outside of the name, a disorder that has historically been thought to be completely psychological in nature–a limited view of this very complex disorder, may also lead to “feelings of discredit”, right? To add to this dialogue, talking about gas, farting, and pooping problems is not easy cocktail party convo–which can feel even more isolating, embarrassing or even shameful topics for some individuals with IBS.
The scientific emerging view of IBS is that it is a complex disorder with a wide range of possible mechanisms that contribute to clinical symptoms- altered gastrointestinal motility, visceral hypersensitivity, disruptions in brain-gut interactions, alterations in gut microflora, overgrowth of bacteria in the small intestine, food intolerance, atypical food allergy (a new potential component), carbohydrate malabsorption, and intestinal inflammation. Let’s just say, IBS is complicated. But, I know many of you reading this, already know that.
We have heard a lot about weight stigma of late. Weight stigma is associated with negative attitudes or stereotyping based on a person’s weight. It is a form of discrimination and unfair assumptions about a person. Weight stigma is associated wit heightened mortality and risk of eating disorders. (see first reference for more on this topic)
So, let’s talk more about experiencing stigma with IBS. I reached out to Tiffany Taft, PsyD, a licensed clinical health psychologist and the Director of Psychogastroenterology Research at Northwestern University Feinberg School of Medicine to share her expertise on stigma in IBS. Dr. Taft recently provided her insights about food fears associated with GI conditions, which was a very well received post on my blog. If you’d like to read that post, click here.
Kate: Can you describe perceived, internalized and enacted stigma?
Dr. Taft: Stigma can be broken down into 3 main types: perceived, internalized, and enacted. Perceived stigma is a person’s sense or feeling that other people hold negative attitudes or beliefs about them due to a certain trait and/or they are treated differently by others because of that trait. So, one patient with IBS may perceive their friend thinks they’re faking or their symptoms aren’t that serious. Or another patient with IBS may feel their boss blames them for flare ups because they didn’t manage their stress properly. Or a third may be told that IBS is gross. Internalized stigma is when the person who feels stigmatized also believes the negative attitudes to be true. So the first IBS patient starts to believe they blow their symptoms out of proportion, or the second patient believes they’re bad at managing stress and therefore that’s why they are sick or the third thinks they’re gross because they have IBS.
Both perceived and internalized stigma are logically associated with poorer outcomes, including increased risk for anxiety or depression, medication non-adherence, and social withdrawal.
Enacted stigma is the actual discriminatory behaviors or attitudes people without IBS may hold toward those who do.
Kate: What has the research shown in regard to IBS and stigma? What percentage of individuals living with IBS are affected by stigma?
Dr. Taft: Overall the research on stigma in IBS shows that it is a relatively highly stigmatized disease. The main themes of IBS stigma are feeling that symptoms are not taken seriously, others believe symptoms are self-inflicted or “all in their head”, feeling others aren’t interested in or don’t understand IBS, and being limited in opportunities. These occur across significant others (family, friends), healthcare practitioners, and colleagues or bosses. Approximately 65% of IBS patients report perceived stigma, with about 1/3 reporting “moderate to high” perceived stigma. Perceived stigma seems to impact younger patients more, and remains consistent over time versus going down the longer the person has IBS. Overall, IBS patients don’t tend to over-internalize these negative beliefs but do to some degree. Those who internalize more also report more depression and anxiety, but we’re not sure if the stigma caused the depression or anxiety, or vice versa. Lastly, we found males with IBS are more likely to be stigmatized based on our study that measured attitudes among the general public toward IBS patients.
Kate: What are some tools to help those living with stigma associated with their digestive health condition?
Dr. Taft: Stigma is tough because we’re trying to change the attitudes and beliefs of others, which isn’t really under our control. But the broader stigma research shows that people stigmatize groups that they do not understand well.
There are several things that make a disease more stigmatized. These include being invisible, having a relapsing and remitting course, being seen as under the person’s control or due to certain behaviors, and associated with taboo subjects (like poop).
Unfortunately IBS (and IBD and most other chronic digestive conditions) falls into all of these categories. To reduce stigma, we recommend talking about IBS to others. We know complete concealment of an illness from others actually leads to worse outcomes. If you think about it, it makes sense because keeping something hidden from everyone is really stressful. “What if they find out?” becomes a repeating thought and the person sometimes goes to great lengths to keep their disease hidden. The easiest way to do this is to withdraw socially, but this comes with an immense cost that often outweighs the worry that others will say insensitive things. So it’s good to come up with your talking points – brief descriptions or phrases to help communicate to others about your disease or how you’re doing. These will probably vary depending on who you’re talking to. I should say concealment is necessary sometimes, so I don’t advocate telling everyone in your life about your condition (unless you want to!). But having a few trusted people you can confide in can go a long way to release some of the pressure with keeping your disease hidden. Inviting a person who is behaving in a stigmatizing way to attend a patient education conference or other event related to your disease (like a fundraiser event) is a great way to break down stigma.
Kate: I love this idea! During the month of April, I do the #IBelieveinyourStory campaign to raise research funds and awareness for IBS. Consider taking part in our upcoming Spin event or social media events next April 2020.
Dr. Taft: Research on discrimination shows the best way to reduce bias is to work together on a shared goal. However, sometimes all of these efforts don’t work. So I also tell people a chronic disease is the best way to figure out who your true friends are. Sometimes we have to shed toxic relationships fueled by stigma we can’t fix.
Dr. Taft: We do have control over internalized stigma. If you find yourself believing these stereotypes about your condition, you can re-assess your beliefs. Are they true? What evidence do I have to support it? Is this belief helping me live a meaningful life or is it hindering me? What would it be like not to believe this? What would I tell my friend if they believed this?
Kate: I see so many individuals on social media with handles that include their health condition. Do you think this can be healing or add to their feelings of stigma? Or does it depend?
Dr. Taft: In the studies we’ve done that recruit patients from social media, we do find those patients report greater perceived stigma than those recruited from a GI clinic. However, they don’t report more internalized stigma. I think putting your health condition in your handle is the epitome of being “out” about your health status. It invites the spectrum of responses and I would assume some stigmatizing comments. A part of internalized stigma theory is something called “stigma resistance” or how a person deflects the negativity spread about their disease. I would say having it out in the open on social media is a form of stigma resistance. I would also guess it’s pretty individual how well a person is able to deflect any stigmatizing comments. Some people may feel even more motivated to bust the stigma, while it may eventually wear another person down. I encourage those who opt to do this to check in with how they’re feeling after their social media use. How is having your condition in your handle or profile impacting how you feel?
There is some risk associated with being “out” online with prospective employers or schools seeing your illness. One of the items on the perceived stigma scale for IBS is a fear of being passed over or excluded and I would be naive to say this doesn’t happen. So I think this is a very individual, complex choice, that is difficult to generalize.
Personally, I added my IBD and EoE status to my Twitter profile but only after I’d been on for a few years. I was open in tweets about my health status, but only after I felt comfortable did I put in my profile for anyone to see. Thankfully I haven’t had any negative blowback from this (that I know of, anyway). And the longer it’s been up there, the more confident I feel in my choice. Just as someone who opts to not put their status for all to see can feel confident in their choice. But to break down stigma, patients do need to push the discussion more. Some will be leaders on the bigger stage, others will break down stigma in their own social circle. Both are equally important.
Kate: Raising awareness, opening up discussions, breaking down stigma. We are all in this together.
How and why weight stigma drives the obesity ‘epidemic’ and harms health, reference here.