No, I’m not a flake. Yes, I wanted to be on time. Yes, I was on time. I had every intention on being there. I was in the car. The car was on. Gear shift engaged, foot on brake. However, someone interrupted me for a bathroom break. And no it wasn’t my 6 year old son. It was my Jpouch. My Jpouch forced me back upstairs into the bathroom. My Jpouch made me miss your wedding. My Jpouch made me miss your child’s birthday party. My Jpouch made me choose between your amazing moment and working to feed my child. In the words of Shaggy, “It wasn’t me!”
More often than not patients with IBD, Ostomies & J-Pouches are often having to explain themselves in full, ghastly disclosure to relatives & friends for their lack of participation in functions. Whereas most people can decline invitations or just not show up, patients find that empathy extended to the able bodied parent or flaky friend, isn’t always given. Mostly because people cannot fathom a person being that sick all the time. Especially when having been, “cured” by surgery. Misleading language makes it harder on us to maintain trust between the patient & loved ones. Patients are often pushing themselves to the brink of exhaustion and sanity to either prove that they are as sick as they are. Or to disprove that they are weak & incapable of having normal lives. As a patient, I found I spend more time advocating for myself & a sense of normalcy, than I do taking care of myself.
Human relationships are so important. They are even more important when you spend most of your day fighting against your own body. Patients need support, love and understanding. Patients know that an able bodied person will never truly understand the ends and the outs of living with a chronic illness. But most people deserve empathy and the benefit of the doubt. Perhaps, you should give the person with a replacement pouch for a colon, the benefit of the doubt. Take a moment to think about it takes just to function. Most chronically ill patients are just surviving.
Don’t stop inviting me. Don’t make me feel guilty for not participating. I’ve placed enough of that, on myself. Trust me.
