Irritable Bowel Syndrome (IBS) and the Perception of “Normalcy”

Recently, Tiffany Taft, PsyD. alerted us to a new blog post of hers. Dr. Taft is a clinical psychologist in private practice at Oak Park Behavioral Medicine in suburban Chicago who specializes in assisting clients and families dealing with a variety of chronic illnesses. She is also a professor at Northwestern University Feinberg School of Medicine and a researcher at Northwestern’s  Center for Psychosocial Research in GI, which focuses on irritable bowel syndrome (IBS), inflammatory bowel disease (IBD) and some other less common and well known chronic gastrointestinal conditions.

In her new post, “Chronic Illness Catch-22,” Dr. Taft describes how, in a recent session, a client of hers who has a chronic illness expressed negative emotions after learning about “normal” test results. Later in the post, Dr. Taft discloses that she, herself, has lived with Crohn’s disease, a form of IBD, for many years and has also had mixed reactions in the past to borderline or normal clinical results of her own. On the one hand, she and her client were each happy that their health was not worse off than it was, but on the other, they were somewhat annoyed, because they knew they still were having symptoms and feeling ill. How can these seeming contradictory thoughts coexist at the same time? Borrowing her own title from that of a well-known novel, Dr. Taft calls this ironic double-bind the “catch-22” of chronic illness. It’s likely that similar thoughts have occurred at one time or another to many of us who have ongoing medical conditions.

Why might we feel this way? Dr. Taft offers one probable explanation in line with her longtime research interest, stigma, about which she wrote a guest post on this blog last April for IBS Awareness Month. Perhaps we fear our friends and family will not take our conditions and the resulting needs seriously if the results of medical tests show up as “normal”. From the personal experiences of many people with IBS, IBD and other chronic illnesses and disabilities, especially those that are not readily visible to others, that concern is not necessarily unfounded.

It’s possible to make an educated guess as to why Dr. Taft thought her article would interest IBS Impact, even though IBD is a different disorder. The course of the disease in a person with IBD can often be followed by blood markers and visible inflammation, but this is not the case for IBS. At this stage of the science, the medical tests of a person who has IBS and no other coexisting gastrointestinal condition, are always completely normal. That does not mean nothing is wrong, but that usable tests for the abnormalities researchers know to be associated with IBS and the ones still not discovered or sufficiently understood do not exist yet. As a result, many people with IBS experience insensitivity from friends and family (Also see the February 27, 2013 post.), who may, for example, tell someone with IBS to “try harder” to maintain a pre-IBS lifestyle or to get well. Many people with IBS have encountered at least one medical professional who has said things like,  “Nothing is wrong.” “It’s in your head.” “It’s not serious.” “It’s not cancer; It won’t kill you,” in ways the individuals with IBS found dismissive. Although much progress in awareness and in the science of IBS has been made in the past few decades, outdated misconceptions about IBS  die hard. So potential stigma, real and perceived, is a huge issue in why some people may have the conflicting feelings Dr. Taft describes in her client and herself.

There are other possible questions that are raised by this scenario. How do we perceive ourselves as individuals with chronic illnesses? Especially if we have an invisible condition like IBS, do we see ourselves as sick and different or  “normal,” just with IBS? How do we want to present ourselves to others or have them perceive us? How are we affected or not by others’ positive or negative responses to our IBS?  Do we hide our IBS or are we open? What are the advantages and disadvantages of our choices in different aspects of our lives, such as with family or friends or in school or the workplace? Do we see IBS as a personal issue or do we identify with the concepts of an IBS community and IBS as a societal issue? Are we willing to advocate for ourselves or others? How much of our experiences and our needs are specific to IBS and how much is in common with other health conditions and disabilities? IBS Impact hopes to explore some of those topics on this blog over time. For now, we encourage you to read Dr. Taft’s post and comment on her blog and this one. We welcome your thoughts and reactions.

4 Responses to Irritable Bowel Syndrome (IBS) and the Perception of “Normalcy”

  1. i have been one of the lucky few who has been cursed with this disease. i have had it for 9ver 29 yrs..believe me, i would love to be on the other side of the fence-to be able to say,”its all in your head.”..yah right. tell me it is all in my head, when for over 4 mts. i have had constant diarrhea, 18-20 bouts a day…or tell me it is all in my head, when i cant even get to the bathroom when i am out and about…and have had accidents on every place on the planet! or tell me that its all in my head when i can not keep any type of food down..tell me its alll in my head ,when i am in so much pain that i cant even catch my breath! the outside world has no concept of what we IBS-ERS deal with on a daily baSIS…try walking in our shoes or rather chained to the toilet for over half of my lifetime. DO NOT TELL US ,”ITS ALL IN OUR HEADS..”…C.S

    • Jan Goggin says:

      I was diagnosed with IBS about 4 years ago and all of my family and friends know that I can’t eat certain things. I went through at least a year of “it’s all in your head” until I just quit talking about it. I just ate the way I knew I had to and if someone asked why I didn’t eat dairy I would just say I was vegan. They can understand that. But now, as I toughened up, I really don’t care what anybody else thinks anymore. I’m the one living with it, not them.

  2. patientj says:

    Being diagnosed with IBS led to a moment of cognitive dissonance: on the one hand, I was relieved it wasn’t something as scary as cancer; on the other, i was deflated because there is no clear and successful treatment for the condition. But there was something more than that: the doctor didn’t know what caused it, and wasn’t interested in trying to find out what had. I’d wished I’d been diagnosed a coeliac; at least then I’d have known what caused it and how to treat it. For me, it’s the not knowing the cause of my condition that is the most depressing thing of all.

  3. Jan Goggin says:

    I have yet to find a doctor who knows what to do with IBS. They either don’t know what it is or don’t care to know. If they can’t give it a pill or do surgery on it, they don’t care. I need to find a doctor who actually HAS IBS and maybe then they can help me.

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