Ulcerative Colitis, Guilt, and Setting Boundaries

Being diagnosed with Ulcerative Colitis sucks, period. Despite the fact that it never becomes easy, there are behaviors and thinking methods that make UC more manageable.

After my fourth hospital discharge this year, I had a conversation with a family member about food, exercise, or something similar I can't quite remember. Whatever the topic, they pointed out that when I discuss decision making with UC, I use phrases like "I don't think my body will handle that well," or, "that's helpful to my body." This differs from typical health talk in that it shirks ownership. For example:

"I don't think I will handle that well..."

"That's helpful to me..."

Both of these statements garner autonomy, as opposed to framing the body as if it were a pet or external object. Nevertheless, this phraseology is not something I initially dwelled on, since I have naturally odd speech and didn't suspect this to be UC related. This changed when the person I had this conversation with attended a support group on my behalf. Among other things, they told me that members of the support group used the same "my body" phrasing which I am known for. Once I learned that other people talked this way, I had to ask myself, why is this the case?

In one word, guilt. I cannot speak for everyone, but I hypothesize that - at least for myself - guilt is the answer. Something I've spoken to my therapist about is how whenever I report worsening symptoms to my parents, doctor, or partner, it feels like somehow I'm letting them down, even though it obviously isn't me who's done anything wrong. Likewise, having UC means learning to say no to a lot of things: spending time with people, accepting offered food, traveling, or doing anything remotely taxing during days when the brain fog is unbearable. It's human nature not to want to burden anyone, and it doesn't help when a medical diagnosis suddenly makes flakiness a mandatory personality trait.

Bringing things back, telling someone that "I can't hang out today because my body is being stupid," is beneficial to my state of mind because it informs the other party of the situation while also reminding myself that it is out of my control. It is my body's fault, not my fault. Such is the message of this article: there are behaviors and lines of thinking which make UC more manageable. In the case of dealing with guilt, the first step is realizing that you have guilt to begin with, and making active efforts to mentally reframe things in moments where they run awry. Remind yourself: it is not your fault. But, let's face it, we're human. Controlling our thoughts is difficult. As such, although it takes time, a good practice is to change our actions and let our thoughts catch up in the meantime. Simply put, fake it 'till you make it. Changing the way we talk about UC is one of many ways to alleviate guilt, others of which are floating around online within medical articles and social media threads. This is merely one strategy I wanted to share because it was fresh on my mind.

Coupled with conversing more purposefully, setting boundaries is another way to manage guilt with UC. I won't expound upon techniques for setting personal boundaries, as this is something many people have heard of and are figuring out for themselves; however, a concept new to me (once again via my therapist) is helping other people to set their boundaries.

As anyone with a chronic condition knows, there is a lot to complain about on a daily basis. From the perspective of a UC patient, they may worry "am I being too much right now?" The listener, in turn, may lack the mental capacity to truly listen in that moment but will refuse to speak up because they don't want to be dismissive. This is where helping other people set their boundaries comes into play. It is important to find your own system, but something simple as asking "bandwidth?" before unveiling your struggles accomplishes two things:

(1) It establishes a boundary for the listener by providing them the opportunity to say no to listening in that moment. Depending on the relationship between the UC-er and the listener, it creates room for the listener to become the listenee - sharing their own turmoil that they haven't yet shared in fear of being overshadowing. Of course, this is secondary to the main purpose of establishing boundaries.

(2) It permits the person with UC to speak without guilt. If they know the listener has the bandwidth to converse in that moment, it alleviates the background stress and makes the conversation more constructive.

At the end of the day, UC still sucks. Nevertheless, I am optimistic that as the UC community becomes more vocal, our collective advice and emotional toolbox will grow and increase the quality of our lives. This article marks the beginning of my contributions towards this movement, and whether you have UC or a chronic condition, I hope this article made you think about the hardships that many around us are facing in silence.