This week’s guest blogger is Marcy Epstein, PhD. She has IBS and other disabilities and wrote this article especially for IBS Impact. For over 25 years, she has held varied positions as an educator, national public speaker, published author of five books and numerous articles, editor, publisher, disability scholar and advocate. She received her PhD in English Language and Literature with a post-doctoral specialization in disability research and rehabilitative psychology from the University of Michigan–Ann Arbor/U.S. Dept. of Education NIDRR Fellowship for Advanced Research and is currently Principal Consultant at Ann Arbor Educational Associates, working with individuals, groups and organizations in Southeast Michigan to support lifelong learning in children and adults, literacy, diversity, educational accessibility and equity. One particular interest of hers is “the complex roles that stress and trauma play in literacy and learning.” All of her diverse personal and professional experiences give her unique perspectives on living and working with IBS that we thank her for sharing with our readers. Dr. Epstein can be contacted directly at http://annarboreducationa.wix.com/home
I had intended a French epigram for which I wouldn’t need to beg the reader’s pardon, and yet the cartoon above really says more about the interior of many people with Irritable Bowel Syndrome (IBS) than a thousand bon mots. It is not just that there really is not an extant body for humor for Irritable Bowel Syndrome. It takes a lot of work to make IBS funny. I like the cartoon because it is pithy and punny: people rarely tell when we have IBS, unless we tell them. Worse, rarely do we feel we can tell them. Worse still, we fantasize about telling them off. Ergo, irritable owls. Ergo, this introduction.
I have always wondered how, despite displaying to them what feels to me like an obviously disturbed interior, other people never guess that I have IBS. They excuse my body’s irritability with social and moral irritability: to them, I am moody or even dark, disappointed in love or work, driven senseless by the elder or the younger, or even menopausal. When I fart like foul bagpipes, they politely blame the dog. If I disappear into the bathroom for an hour, someone will kindly attribute literariness to me, observing once that I was likely off reading Babette’s Feast on the pot (au contraire!) Incredible, I hoot inwardly. How can they not notice?
Fifteen years after diagnosis with IBS, getting used to the invisibility as much as the next cussing owl, I am considerably more pleasant and serious about our condition. IBS is complex, with very limited definition medically and legally as a chronic or conditional disability. It is represented in a constellation of symptoms felt in the core of our bodies, affecting every one of our functions, not particularly visible but not invisible either, if you know how to look for it. IBS is a bit like our owl that haunts and sleeps periodically. Painful, potentially isolating, potentially threatening, IBS can seem predatory on daily lives and relationships.
Our condition joins colitis, Crohn’s Disease, and other gastrointestinal and motility disorders in both the degree of pain and discomfort we experience and in the sensitive nature of sharing our discomfort. Would we talk about our bowels if they weren’t a clear source of pathos for us?
Once upon a time, I couldn’t care less about my insides. I was one of the Iron Guts, coated with extra hot sauce and beer. Things changed for me quickly after I broke my neck in 1997, incurring some spinal cord compression with a host of neurological symptoms from tingling pain, weakness, anxiety, to irritable bowel syndrome. I wrote in my essay for Deep: Real Life with Spinal Cord Injury (U. Michigan: 2006) that I barely understood my own disability until I lay in my own uncontrollable filth in an Israeli hospital, waiting for a stranger to see and respond to my distress. In the first years after injury, as I began teaching, my ailments were pretty obvious, but again, mostly because people interpreted cues other than my condition, qualities more dignifying of me, I supposed, but misleading. I looked like a banged up car with my labored gait, smelly collar, and furrowed brow. I could fall to tears and/or lose continence at any moment. Transitions to and from my office took hours, and I couldn’t distinguish if I was too anxious or too neurogenic or simply constipated from stress. I came to see all of these as interrelated, but I couldn’t see the relationship itself.
Here was the rub: my IBS was invisible to myself. For two years I fought the diagnosis, simply because it seemed like the easy way out for my doctors to tell me I was too anxious or hypochondriac. A syndrome isn’t exactly locatable or treatable. I wanted direction: take this pill, rest for two days, avoid hot sauce and beer. My physician explained the syndrome, smiling through the pronunciation of the words, as though IBS weren’t real, really, but just something to explain what he could not otherwise explain.
In my particular case, how to handle this “syndrome,” IBS, when I am at work was subsumed into treatment for my anxiety. I stayed in the environment of work because I had to survive, and, like you, I require purpose. But I had to switch gears in my profession as a college professor, to accept that my condition—a mix of privileged and disabled—was not going to be a popular issue with me or with my colleagues. As my gut suffered, so went the rest of me: I needed surgery after surgery, my immunity to illness and to self-blame plunged, and my work ethic bowed under pressure. Teaching felt more Herculean than ever, physically and emotionally. As my career slowly suffered from my mood, weight fluctuations, anxiety, and physical discomfort, I lost certain necessary ways of working with others and gained other intrepid ways to think intestinally. It slowly dawned on me that the syndrome I was resisting was real, indeed realer than our culture is prepared to encounter. So it was no surprise to me that I didn’t want to encounter myself either. I wanted to meet the world, not my own insides. Between IBS and several hernias, I really wanted my insides to stay inside, and the outside world to stay outside.
Bowels are definitive of organic life, yet anything that suggests evacuation of our waste seems adversely indicated in civilized society. The more advanced our world becomes, the more alienated we grow from our own insides. So to speak of our irritable bowels—with our families, communities, or workplace—represents a challenge to sensitivity. The reinforced invisibility of IBS—that we both don’t show our condition nor do people acknowledge any sign of it– means that there is nothing for people to stare at or ponder or pity. The syndrome is minutely visible, the real conjecture from the swollen curves of our bellies or maybe how we hold our bodies as we manage pain. I wonder if the sensitivity works both ways, not just to oppress us but to preserve us within our culture of work: I’m not sure I would like it if people knew every time I were having a shutdown of my system or just having the experience of pain. Not only would I feel too visible as an object of people’s discomfort about bowels, but also it could slow down my productivity. There would be the exhaustion of bowel distress and its explanation.
But I do not kid myself that I am completely invisible with my IBS and remember that the effects of IBS are being felt indirectly in the social construction of my work. My condition may be invisible, but my behavior around the condition is perfectly visible. My peers cannot be that thick as not to miss me for the twenty minutes I am writing in the restroom. They may substitute a reason, but I am not at my desk. The drained, anguished look like we’ve just had something terrible at lunch sticks out a bit more at three, four, and five o’clock. The pharmacopia of anti-spasmodics and Maalox on my dresser and in my bathroom pretty much tells guests that something’s amiss in the mesentery.
IBS shapes my work life even as it disrupts it. You see, like most people with IBS, I keep working with the great majority of my symptoms. When I can finally leave my own bathroom, I get to my first appointment. When I have spasms and bloating, I breathe carefully through the pain, visualize with humor that I am still with the majority, if I count the billions of microorganisms inside. I take sick days off when I cannot think because of the pain and exhaustion.
Leong et al (2003; reprinted in JAMA/Archives of Internal Medicine) produced a retrospective analysis of administrative claims data dating back roughly twenty years: “Results of the 1993 US householder survey² indicated that patients with IBS missed about 3 times as many days from work or school annually as people with no evidence of a functional GI disorder (mean, 13.4 vs 4.9 days; P = .001). More patients with IBS (11.3%) reported that they were often too sick to work or to attend school compared with those without IBS (4.2%).² More recent survey data (1999) indicate that the actual number of missed or shortened workdays due to IBS has increased even higher since the early 1990s.”¹¹
This research bodes ill for the IBS community in a world of work that is perfecting the worker, with employers in search of employees who never miss a day of work, who can remain all day in classrooms, factory floors, or offices, whose use of short- or long-term disability is most unlikely. In short, the truth about how IBS affects us can imperil our employability.
Assuming you are working (since paid or unpaid, most of us are raising children, volunteering, holding down one job or another), there is the second dimension of IBS and working that is more germane to my experience, and that is how to endure at work, building a balance between the perfectionism of the worker and the imperfection of a major body system. One term that Leong et al use that may help represent the experience of many people working while managing IBS is absenteeism v. “presenteeism”. Presenteeism is a powerful term. It suggests presence but with consideration, the problem not of staying away from work but of staying with it.
In that spirit, I conclude this writing with a practical list to help dispel the stigma attached to IBS and build instead a presence as productive survivalists, a presenteeism that isn’t posed as an HR problem as much as a possibility.
1. Consider shared spaces. Nina Pan wrote earlier this month in this blog that “[h]aving IBS is often an isolating experience, and some people with IBS who have ‘come out of the closet’ have found that the stress of hiding and worrying about who knew and how much they knew actually triggered worse symptoms. No, not everyone will ‘get it’ and that can be hurtful or tiring, but people without IBS will never learn to understand unless we are willing to tell them. Some of them will help you and it may be the people you least expect.” If you are invisible at your place of employ, start creating some incremental visibility. Identify a co-worker and create a “mind-body friendship” with them, one informed by what is going on in your body, good days and bad. If you are already visible, create positive contexts for interactions around your IBS, supportive notes or even some apropos humor to relieve the strain, so to speak.
2. Talk with colleagues more, complain less. This can be tricky, given how exhausting and painful IBS can be at times, but embrace the principle of professionalism of deflecting intense attention to IBS outbursts (except in medical emergencies). If you are in a difficult place with your IBS, deflect as much drama as you can. Instead, choose a time of calm in which to draw others into an understanding of what is happening for you, including the incident that recently occurred.
3. Protect your rights. If IBS disrupts major functions at work, and you can document this with your physician, then navigate the stormy channels of disability rights carefully. For example, disclose your functional accommodations at hiring, not the interview. I have not seen bowel motility work often as an icebreaker for employment. Make certain the accommodations you request are tailored to your IBS rather than the IBS of psychiatric history. Be reasonable and friendly, and you will not only expand your legal status but those of our allies. Most employers need IBS education, and unfortunately, without your education of them, your rights may be as inaccessible as the bathroom in the next building.
4. Take care of yourself at work. This principle cannot be overemphasized. Respecting yourself at work breeds respect from others. Caring for yourself at work sends the message that the shared space of work is rich with real life and that you are capable of embracing your work purpose, with a bit of help or understanding here and there. I cannot prescribe what caring for yourself at work means for you. For me, it means a locked drawer with medications, water bottle, honey candies, a picture of my dog, a pacifying note from a kind student, a book to read at lunch, and a bit of mad money. I used to keep extra undies in there, but nothing too sexy.
5. Use online support from the IBS community. Some days, people are just not going to get it. Join the Facebook IBS presence and other chat rooms for people struggling at work, and again, avoid the obvious pitfall of complaining about co-workers or workplace policies. Stick with communicating about your condition and state of mind, but be careful about demonstrating any incompetency relating to your work responsibilities, anything that might be inflammatory enough to risk job security. That said, you are not alone. When colleagues don’t suffice, find people of like minds and gastrointestinal tracts.
Since we have ended IBS Awareness Month, it would be good to tell our peers soon that we are alongside them at work and perhaps also to deepen our own awareness of IBS. Let’s not disappear because our month is over. I offer these next and last two ideas as radical forms of presenteeism, meant for those who feel the tug in their guts of not being fully present at work because we aren’t making ourselves visible:
6. Offer your workplace (using your HR as appropriate) training on Presenteeism. Think broadly about how IBS shares issues particular to your line of work with other conditions such as Crohn’s Disease, pregnancy, hypoglycemia, or diabetes. Publicize IBS Awareness Month. It is unwise to promote employer micro-micromanagement into how we account for our work-product while present at work each hour of each day (nothing like being responsible for the erosion of labor rights), but talking about how to adapt your workplace toward maximum efficiency and satisfaction (emphasizing employee self-regulation) can make you a model of excellence with IBS, not despite it.
7. Think of yourself differently while functioning with IBS. Unlike other potentially disabling conditions, IBS can strike hard at our bodies, minds, and paychecks. Socially invisible, our condition may be somewhat reified as an odd complaint. However, I would argue that a significant component of our complaint is not nervous, spastic, or such. Our complaint as we manage IBS at work is that we are little understood and yet caught up in a labor environment generally unsympathetic to imperfect workers. Forget the owl. See yourself as the canary in the proverbial mineshaft, but don’t pass out from social and professional toxicity. We with IBS indicate at work the oft-immeasurable properties of understanding of difference, teamwork, and adaptability. We feel it in our guts. Don’t deny the canary’s delicacy or subdue yourself to employment perfectionism. Instead, sing or fly. Remember Maya Angelou’s words from “I Know Why the Caged Bird Sings”:
The free bird thinks of another breeze
and the trade winds soft through the sighing trees
and the fat worms waiting on a dawn-bright lawn
and he names the sky his own.
Though watch out for those fatty worms.
Full text of “The Economic Consequences of Irritable Bowel Syndrome” is available at http://archinte.jamanetwork.com/article.aspx?articleid=215426#METHODS