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.