Invisible-er

I need to rant/whine a little bit.  And I just need to be heard, I think.

I’m feeling frustrated at the invisibility of ulcerative colitis.  It’s an invisible illness, yes, but I feel like it’s invisible-er than other invisible diseases–particularly Crohn’s.  (For those of you who aren’t familiar with it, Crohn’s disease and ulcerative colitis are the two main types of inflammatory bowel disease.)

People have heard of Crohn’s.  There are Crohn’s awareness posters and t-shirts and bracelets.  A lot of people know someone with Crohn’s.  They even have a name for themselves: Crohnies. 

But most people don’t know about ulcerative colitis.  I think I’d maybe vaguely heard of it before I was diagnosed, probably from a drug commercial on TV that I wasn’t really watching.  We don’t have a cool name–I mean, what are we going to call ourselves, Ulcerites?  We’re mentioned on joint IBD awareness stuff, but I’ve never seen any awareness anything just for people with UC.  When UC is recognized, it’s often minimized in comparison to Crohn’s because less of our digestive systems are affected.

The heart of the matter, I guess, is that I don’t want to be invisible.  I want my struggles and pain to be seen and validated, not compared and minimized.  I want people to know that what I’m living with is real and painful and difficult.  It’s isolating enough on its own without being swept to the side.

I want to be seen.

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6 Comments

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6 responses to “Invisible-er

  1. missmultiple

    I can second your position. My past step-father has ulcerative colitis. Most of the times my mother told someone, they had no idea what she was talking about.

  2. Kenzie - Motorcycles, Books & Fructose

    Anytime I see awareness stuff about UC it’s always says Colitis. Not Ulcerative Colitis.

  3. We see you here… Thank you for making this invisible illness more visible.
    peace,
    Steve

  4. Yes, I hear you loud and clear. Those of us with normally unheard of gastric issues that even the medical community has a hard time wrapping their heads around can get extremely frustrating at times.

  5. I hear you, and you are seen by me, by us here in ciberspace. I’m sorry you have to live with UC. that must be awful. I dont know much about it, but I want to learn so I’m going to google it. I only knew of IBS, I didnt know there were diseases which branched off of it.

    • Actually, UC isn’t related to IBS–it’s a common misconception. IBS is irritable bowel syndrome, and UC is a type of IBD, inflammatory bowel disease. There can be some symptoms in common, but IBS is, in most cases, far less serious. It lacks the inflammation present in IBD, and it usually doesn’t cause any damage to the GI system. With UC, you develop ulcers in the colon. I have the most serious form, pancolitis, which means the disease affects my entire colon. When I had my first colonoscopy, my entire colon was one continuous ulcer with abscesses and major blood loss. The inflammation was so severe that the nuclei of many of the cells exploded. I never even knew that could happen, but apparently it can. The ulcers had eaten nearly all the way through my colon, and they were afraid they’d have to surgically remove my whole colon right then and there. Luckily, we were able to avoid that, but it might still end up happening. The drugs to treat UC are much scarier than the ones for IBS, too. I’m on steroids, which I haven’t been able to get off for nearly a year without causing a worse flare. I’m also taking two immunosuppressants, so I worry any time someone sneezes near me. One of them can cause leukemia, lymphoma, or death; the other can dangerously suppress blood counts and it makes me constantly nauseated and makes my hair fall out. I wish I just had IBS….

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