Dear Society: A Letter From an Ulcerative Colitis Patient

Why does talking about digestive health issues have to be so taboo?

Patient Expert
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Dear Modern Society,

I bet you’re tired of getting letters by now, aren’t you? It seems as though everyday there’s a new letter to the world, telling us how ill-informed we are on endless topics. This will not be that type of letter. Though I do hope we can all agree that we’ve got a lot of learning to do, this letter isn’t even really about you, per se. It’s about me and a bunch of my friends who are just your average people living with ulcerative colitis (UC), a chronic illness of the digestive system.

UC is a chronic condition many don't talk about

There are about 100,000 people in the United States living with UC, so you likely already know someone who has it — maybe a coworker or an old friend. There’s also a good chance that you don’t know they have UC because they don’t want you to know — that’s likely because for some reason, society has decided it’s embarrassing to talk about the digestive tract. We all have one, we all use it every day, but for some reason, we can’t talk about it: Digestive tracts are like Fight Club.

We all have one, we all use it every day, but for some reason, we can’t talk about it: Digestive tracts are like Fight Club.

Maybe you have a loved one in your life who has another type of scary diagnosis. Maybe your little sister has spinal muscular atrophy, or your brother has hemophilia, or your mom has myeloma. These are all devastating diagnoses, and I’m not here to compare the severity of one over the other — but I will say that people with diagnoses unrelated to the digestive tract may not feel the same level of shame. They may not feel the need hide it from their friends and family, and they probably are more likely to seek help at the first signs of problems.

I won’t waste your time with facts you won’t remember, like up to 45 percent of UC patients will have at least one surgery in their lives, or that we’re all have an elevated risk for colon cancer. But I’ll just make one tiny request: Can we please change the way we talk about digestive health?

How can we fight the UC stigma?

Start with your kids. Why not buy them those funny books about animal poop or one of those new games about toilets? Or buy them a poop emoji pillow? Move on to your friends, and ask them how certain foods affect their gut after they eat. Talk to your parents, and implore them to have routine colonoscopies.

Maybe if we all made a few more poop jokes, we’d be less grossed out by the idea that we all digest food. Maybe then, when someone saw blood in their stool, they’d be more likely to see a doctor about it.

Maybe if when people turned 50 and we throw “over the hill” parties, we could have a colonoscopy-themed cake. Maybe then we’d open a dialogue and catch more cases of colon cancer.

You see, we all perpetuate this stigma, deciding it’s not normal to talk about your digestive tract as an adult or the problems it’s having — but the truth is, people are dying because of it.

Opening a dialogue can save lives

Despite my UC, I have a pretty great life, and I’m OK if you are grossed out by my situation. I’ve spent a long time learning to be OK with what I’m working with, but not everyone is me. Some of us still need some help talking about these issues, or some encouragement to see a doctor. That’s how it started for me. I had one friend in the whole world who I talked to about my digestion, and that friend saved my life because she convinced me to see a doctor.

We’re all just one fart joke away from changing the way we talk about digestion, which in turn changes the way we talk about UC. UC is so much more than just faulty plumbing, but like I said, I’m not here to fill you with statistics or other hard-to-remember facts. I just want you to remember that we all eat, we all digest, and we all have bowel movements. Some of us have a harder time with all of that than others, so let’s talk about it.

Sincerely,

Jackie, your average UC patient