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So You Think You Have IBD.

So You Think You Have IBD

In the last week, three different friends of mine texted to tell me they think they have IBD. THREE. At first, I rolled my eyes, thinking…you don’t just diagnose yourself after reading a blog article or seeing a post on Facebook. Then, I paused and listened to their concerns and symptoms.

Each of them said they felt fatigue and brain fog. Each of them mentioned diarrhea. I’m not a doctor, but after knowing these friends for years, and showing no signs of illness whatsoever, I was hesitant to believe IBD was really the case. I tried to be thoughtful with my words, but for some reason, it aggravated me a bit to think they so casually thought their reality was the same as mine.

IBD and IBS ARE different

I told them all it sounded more like IBS (Irritable Bowel Syndrome) than IBD (inflammatory Bowel Syndrome), and that they should see a GI if they were concerned. Then it was like a light switch…”oh yeah, IBS…that’s what I meant.” It seems no matter how much those of us in the IBD community try to hit home the fact that IBS and IBD are different, the average person doesn’t seem to see it that way.

While it may not seem like a big deal for friends to reach out for guidance, to me, it almost felt like a slap in the face. It made me feel as though my chronic disease, which is a daily battle, whether in remission or not, was something that’s commonplace. Something that is so common, that you can manage and make it through without medication, medical intervention, watching what you eat, managing your stress…the list goes on.

“Crohn’s disease dictates so much of who I am…”

Then, I started thinking–maybe my friends were trying to relate to me. Or maybe they were trying to show they are listening to the words I share on social media and on my blog, “Lights, Camera, Crohn’s.” It’s a slippery slope, because so many people in our inner circles never ask how we feel or seem to care that we battle this disease, yet when someone finally reaches out, it catches us off guard.

My call to action for those of you reading this as a friend, family member, or caretaker who does not have IBD is to really think how you communicate with us and be mindful of the words you use. Crohn’s disease dictates so much of who I am and has created many hardships for me in my life. It’s not something I take lightly. It’s not something to be flippant and nonchalant about. If you honestly think you have a health condition and genuinely want advice, that’s one thing. But, when you comment on an Instagram post and say, “oh yeah, I have IBD…,” it leaves those of us who actually do at a loss for words. We don’t want to come off as a bad friend, but we also want to protect ourselves from dealing with mindless banter that in the end is only going to frustrate us and make us feel worse than we already do.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • thedancingcrohnie moderator
    11 months ago

    I can definitely relate to this. It can be frustrating when people play down something that you suffer with daily. I always just take deep breathes and remind myself that they are just operating from a place of ignorance. They simply do not know, and I tell myself it’s a waste of energy to get upset.

    The best we can do is educate when we can, but sometimes, it’s almost best to just save our energy and nod and smile. We know what we go through. Our close loved ones know what we go through. And sometimes, that’s enough.

    Wishing you the best in health!

    Always dancing,
    Elizabeth (team member)

  • TristanThePiston
    1 year ago

    So often I get the sense that people see Crohns as a bad stomach ache or a mild flu, they imagine it as “bad, but tolerable.”
    I feel that often that might be because of how brave and stoic people living with IBD tend to be. We often spare those around us from the full truth. They don’t see you when you are so out of your mind in pain you consider Hara-Kiri not as a suicide attempt but to bring some relief, or while you are given the third degree by doctors at emergency because they think you want pain killers.
    People are experiential, and if they haven’t been there themselves, its difficult to put themselves in our shoes.

    I really enjoyed reading this piece as I have had similar experiences, people suddenly call on you describing their bowel movements and it becomes a normal part of your life somehow.

  • rick
    1 year ago

    Thanks Natalie. Sometimes I find it’s better to keep a low profile. It’s like many things in life, until you’ve experienced it, it’s near on impossible to understand. I don’t really talk much about my Crohn’s except with my wife (49), daughter (7) & parents (89 & 85). Do mention it to people but only if they are only 40! Rick

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