Irritable bowel syndrome is a socially unacceptable illness, because it involves bowels, bathrooms, and pooping—topics most acquaintances don’t want to hear about. When you tell people that you have a chronic illness or a disability (depending on what terms you’re comfortable with using—that is up to you!), you might hear the response, “Do you mind if I ask what your condition is?” Then, if you’re like me in my younger years, you mumble “irritable bowel syndrome” and wait in mild horror to see what their reaction is.
Some people associate irritable bowel syndrome with mild cramps or eating issues and don’t know the wide range of symptoms and difficulties it can cause, so they might dismiss your condition as “not a big deal.” Some people move on to another topic immediately as soon as they hear the word “bowel.” Some people are generally fascinated, curious, and don’t mind hearing about “unacceptable” symptoms. But if you’re not comfortable talking about it with that particular person, you can say so. You are not obligated to explain your symptoms to anyone!
However, the socially unacceptable nature of some health problems is a serious issue. Diseases like insanity and bowel issues are underreported. Health issues associated with sex are not talked about. When you break your ankle, you’ll be met with treatment, commiseration, and support while you heal. But when you start having painful cramps when you poop, you keep quiet because it’s embarrassing. People delay getting checked for serious conditions and getting diagnosed because they’re too embarrassed to bring up their symptoms, even with a doctor. Thus, we suffer in silence because we’re ashamed. But we shouldn’t have to. Everyone poops. No one should be ashamed about it.
The solution to this issue is a slow one. More people are starting to speak openly about taboo health topics, like bowel diseases, female bodily functions, and mental conditions. This helps reduce the stigma. As awareness grows, hopefully, our embarrassment will decrease and support will expand.
Taking Up Unacceptable Space
There’s a lack of disabled-friendly spaces in our world. Wheelchair access is limited or nonexistent in many places. People who use disabled parking spaces when they have invisible conditions get yelled at by healthy passersby. Strangers distract guide dogs by petting them even when their owners ask them not to.
Where IBS is concerned, one of my biggest issues is bathroom lines at an event. If I’m having an attack, I need to get to that toilet asap. But good luck if I’m at a comic convention and the cramps start in between the Firefly reunion panel and Felicia Day’s signing session—that line will be a mile long. What I really need, for events to be completely accessible to me, is a pass that allows me to bypass bathroom lines. Of course, such a pass does not exist, and even if it did, I can only imagine the angry looks and suggestions that I’m abusing it or that I must have borrowed it from someone else just to skip a line, because I don’t “look sick.”
Our society has been designed for healthy people. So much so, that it’s completely acceptable to say, “I don’t care if my baby is a boy or a girl, as long as it’s healthy.” Of course, no one wants their child to experience the trials, pain, and heartache of disability and/or chronic illness, but this type of comment only perpetuates a society that repeatedly sends the message that disabled people are unwelcome.
I don’t know what the solution to this is besides education, advocacy, and simply hoping to be treated with respect when in public spaces.
Behaving in Unacceptable Ways
In addition to socially unacceptable symptoms, there are behaviours associated with being chronically ill that are also faux pas, according to society. For one thing, constantly cancelling plans with friends. When you do this for the fifth, tenth, or twentieth time, some people start to think that you don’t want to hang out with them. Society has wired us to think that we’re being purposely avoided if friends repeatedly cancel plans, that illness is an excuse when it’s used over and over again. In reality, chronic illness is exactly that—”chronic.” It’s not going away. We will continue to cancel plans, over and over again. This doesn’t mean we don’t want to hang out with our friends; it means we’re in the bathroom, bent over with painful cramps, and literally cannot leave the house. It means we’re exhausted and need to rest on the couch while watching Netflix instead of going out. It means we had to use up our energy making dinner or taking a shower, and that’s all we had in us for the day.
I particularly appreciate my friends who understand this. They let me know that they miss me but understand my limitations. They make an effort to make things easy for me during social activities—offering to come to my place instead of going out, offering to meet online instead of in-person, helping me scout out bathrooms when we go to a public space, accepting when I need to stay home.
Another unacceptable lifestyle (depending on who you are talking to) is living in a mess. In my household, dishes pile up, bathrooms stay dirty for weeks, rooms go unorganized, clutter happens. Neither my husband nor I have the energy to do all the cleaning and organizing that we’d like to. (And, I have to add, the eight-hour-day, five-day work week is an antiquated system designed for healthy couples—one who stays home doing household work while taking care of children, and one who makes a living wage. It doesn’t make space for single people, for couples who both work, for an economy that demands two people work full-time in order to afford housing, or for people with disabilities. It is, quite frankly, an outrageous and harmful system.)
I have to ration my energy; like spell slots in Dungeons & Dragons, I only have so many and then I’m out. Some days, making dinner takes precedent over doing dishes, work takes precedent over taking a shower, or playing a video game takes precedent over doing laundry. I’m never “on top” of my life. My to-do list is neverending. But that’s okay.
I don’t have to have a perfect household. I don’t have to have everything together. I do what I can, when I can, and I try to keep taking time for self-care at the top of my list.It’s okay if you’re not “socially acceptable.” (Well, it’s not okay, but you don’t have to feel guilty or like you’re worth less because of other people’s attitudes.) You are valuable. You matter. Exploding gut and all.