Our Stories

These special people inspire us with laughter and wisdom. Read their personal stories — or share one of your own.

The Truth About Living with an Embarrassing Disease

Story Image

When I was diagnosed with ulcerative colitis as a young thirteen year old, I didn’t even know what it meant. All I knew was that I had to constantly use the bathroom and be embarrassed in class, around my friends and even at home. It took me months to realize this wasn’t just the stomach flu and that this was something I was going to carry with me for the rest of my life. 

 

The hardest part about having ulcerative colitis for me isn’t the medicine or the ups and downs of remission and flare-ups, but it’s the inability to accurately describe how awful it is to someone else- without telling them the gory details of the frequent bathroom trips and other symptoms. 

 

For me, I am tired of being embarrassed by it and I refuse to be. After nearly 10 years of having this, I know it’s never going to be easy- but explaining it to other people can be. In the past, I usually described my condition very ominously so that no one would discount my disease by thinking it’s “just stomach issues”. I also didn’t want to be embarrassed by describing the symptoms when prompted and be thought of as “gross”. But now that it has been almost an entire decade since being diagnosed, I realize it’s not about how I have to hide my disease or how it sounds to other people: it’s about how other people can change their way of thinking about IBD. 

 

Yes, I have ulcerative colitis. 

Yes, I have experienced some of the worst pains of my life through this disease. 

Yes, there are times when I am going to use the bathroom unexpectedly and frequently. 

Yes, this disease affects my colon. 

Yes, my symptoms might sound funny or gross to you. 

No, it’s not embarrassing. If I’m not embarrassed by it, why should you be? I am the one living with it. It’s time to destroy this idea that anything that has to do with going to the bathroom is laughable or disgusting. 

 

To me, living with this disease is hard for the obvious reasons, but then there are the not so obvious reasons, too. Having to explain why you’re going to the bathroom so much, why you’ve lost or gained weight out of nowhere, why you can’t do certain things because you’re not sure where the next bathroom will be. Having to excuse yourself in the middle of something important or missing out on the little things because the pain is too intense. Being told to “hold it” when it’s just not possible. Living not only with the symptoms, but the embarrassing stigma surrounding them. It is as if you want to tell the whole world about your problems, but are too ashamed too say them out loud. 

 

It’s not fair by any means, but it’s not something I will ever be ashamed of. If you ask me what I have- I have ulcerative colitis. I am not afraid to say it and I am not afraid to explain to you what it is. I want as many people to know about it as possible, despite the idea that it’s gross or embarrassing. I think we, as a community, need to talk more about how to have these conversations with family, friends, coworkers or anyone else. 

 

If were too embarrassed to talk about it, how is anyone ever going to know about it? 

Story Author Image

gannmurphy
Joined Mar 8, 2017
Location: Washington, District of Columbia
Diagnosed: 2007