What I Wish People Knew About IBD
Every person has a myriad of roles to play in society, some of which are voluntarily assumed and others of which are assigned. As for myself? I am a student, a friend, a daughter, a mentor, and also a patient. The fact that I have a chronic illness isn’t something I hide anymore, but sometimes, when faced with seemingly innocuous questions, I find it easier to filter my responses in order to shield others from seeing the extent to which IBD has affected my life.
When my friends feign shock and playfully comment, “Wow, you’re taking the elevator and not the stairs?” I find it far easier to just pass it off by saying, “Yeah, I just wanted to try a new route!” My true reason? Sometimes, as a result of my illness and my medication, I undergo excruciating knee pain and joint weakness.
When my classmates are discussing an assignment and ask, “Did you finish the paper already?” I shrug and nonchalantly say, “Yeah, I had nothing exciting to do this weekend, so I had some extra time.” In reality, I wasn’t sure how bad my pain would be this week, so I had no choice but to work ahead of time.
When others catch sight of the inside of my purse, they comment, “Wow, you’re such a mom, you always have so many granola bars!” I laugh and explain, “Yup, I just like a variety!” What I really meant is that I wasn’t sure if I could eat the food here or when my energy would suddenly plummet, so I brought my own just in case.
Ulcerative Colitis has shaped my daily life, but it has not defined me. Yet, I leave so many things unspoken for fear of being a burden or causing unnecessary confusion or pity. It is thus worthwhile to be mindful of the struggles others may be facing beneath the surface, whether they verbally acknowledge them or not.
I wish people knew that having Inflammatory Bowel Disease (IBD) isn’t black or white. Being “in remission” does not mean that the patient may not be suffering from pain, discomfort, or a plethora of other uncomfortable symptoms or side effects of medications. Some days are better than others, but there is no cure for chronic illnesses such as Ulcerative Colitis or Crohn’s Disease.
I wish people knew that just because an IBD patient “doesn’t look sick” doesn’t mean that he or she is healthy. Outward appearances can be deceiving, and this is especially true of IBD patients. People in this “secret society of the sick” are more often than not battling against their own bodies as a result of their diseases. Having to prove to others that they are, in fact, sick is just another unnecessary battle to fight.
I wish people knew that having IBD isn’t just like having a digestive issue like the stomach flu or an uncomfortable “toilet disease.” Crohn’s Disease and Ulcerative Colitis are diseases that are much more complex, with symptoms ranging from nausea, abdominal pain, joint weakness, blood loss, and fatigue, not just using the restroom more frequently.
I wish people knew that although I know I am not lucky to have Ulcerative Colitis, I am incredibly proud to be a part of such a resilient community of patients and caregivers. I do not view IBD as a curse, but rather a unique, and sometimes frustrating, challenge. Beyond the physical issues, the crux of the matter lies in the understanding gap between what IBD seems to be on the surface level and how it actually affects patients’ lives. Sometimes, I wish others were able to look an IBD patient in the eyes and say, “It’s okay, I understand. You don’t have to pretend.” While reality may not be that simple, I do think that acknowledging both the spoken and unspoken aspects of Crohn’s and Colitis is the first step. I want to make IBD visible, so that together, we as a community can be indivisible.
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