Community Feedback: What We Wish More People Knew About IBD.

What We Wish More People Knew About IBD

“You seemed fine yesterday”  ·  “So, do you just poop all the time?”  ·  “You don’t look sick to me.”

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How much easier would it be if people just understood inflammatory bowel disease, like Crohn’s and ulcerative colitis? If they just got it. If for once,  you didn’t have to be the person constantly correcting them. If maybe, the family understood why you were fine at lunch yesterday, but you had a flare today, and therefore can’t go to dinner tonight.

You are not alone! And as annoying as it can be to fight the misunderstandings day-in and day-out, each time you educate someone about what it’s really like to have IBD, you’re gradually making it better for others.

At the beginning of this month, we asked you in the InflammatoryBowelDisease.net Facebook community what you wish more people understood about IBD. Over 100 of you shared your thoughts on this topic and many more showed your support through likes and shares. While reviewing the feedback, it quickly became clear that the following areas of IBD management are in desperate need of further public awareness. The more we break the silence and share the facts, the more our society will begin to recognize the true impact of IBD

“It is such a lonely disease”

Bathroom habits are unfortunately a social taboo – many of us were raised to believe that discussion of poop was “inappropriate” or “crude” and despite the fact that IBD is much more than a “bathroom disease” it has still been heavily stigmatized. Therefore, it can be difficult to discuss some of the key symptoms of IBD with friends and family, let alone coworkers or managers. Feeling like you have no one to truly open up to can be extremely isolating, which is why many of you in the community wish more people understood how lonely of a disease IBD can be.

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“For me it would be how lonely of a disease it is. A lot of the symptoms you just don’t want to discuss. And you can often pass for healthy so you can get away with not talking about it.” 

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That it’s such a very lonely disease and I need more hugs & understanding than criticism.

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“I can’t predict my flares”

Many of you in the community expressed feeling guilty when you have to cancel plans or stay in bed all day. While your feeling is understandable, no one with IBD or any chronic illness should ever feel guilty about canceling or changing plans. No one chooses to have a flare and it would take a very talented magician to predict the onset of a flare, but that can be very difficult to explain to friends and family.

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“I don’t mean to cancel plans. I know I “seemed fine yesterday” and now I’m saying I’m too sick, but that’s how flares work – I don’t control it and I can’t predict it” 

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“The flare ups happen without reason it seems, and leave you feeling drained. The nights you just start to sleep getting woke up by the urge to go. Not just once, but many times during the night. I fear going out, I map in my mind where the restrooms are just in case”

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“Just because I look fine doesn’t mean I feel fine”

Fatigue, abdominal pain, joint inflammation – these are all invisible symptoms that can accompany IBD. Even an ostomy bag – a pretty recognizable characteristic of IBD – is often hidden under clothing.  As such, there is very little outward indication of the pain and anguish IBD can cause. Gastrointestinal flares can feel “worse than child birth” but is not always noticeable from the outside looking in, which is why many of you in the community expressed frustration when friends and family say “You don’t seem sick to me.”

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“We look ok on the outside but please understand how sick and in pain we are on the inside. Also I would love a hug from someone who will just let me cry it out once while they hug me.”

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“We may look fine on the outside while on insides are ravishing our body and lives with continually pain”

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“It is more than just a pooping disease”

Many of the most impactful symptoms of IBD occur far outside the bathroom walls and can affect multiple parts of the body, beyond the digestive tract. Hearing that IBD is simply “bad gas” or “occasional diarrhea” can be the most frustrating and insulting thing of all, which is why most of you agree this topic is in desperate need of further education and awareness.

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“It’s not just about pooping, although that’s a big part of it. There’s joint pain, fatigue, pain, and it’s an emotional roller coaster as well.”

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“It’s not just about going to the bathroom all the time. It’s also about how it effects us on a daily basis, just getting out of bed some days is a struggle.”

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As Crohn’s and Colitis Awareness month comes to a close, it is especially important to familiarize people with the nuances of IBD. The public will not become knowledgeable overnight, and we cannot expect them to understand everything right away, but hopefully, the more information we spread, the more apt people will be to ask questions.

For now, we can build the IBD community with people just like you. You are not alone! And we want to thank each and every one of you who shared your thoughts and experiences about what you wish more people knew about IBD. You are the voice of the community!

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