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person angrily being told not to talk

You Don’t Have Crohn’s? Then Keep Your Comments to Yourself!

Unless you’ve been through it yourself, or are a caregiver for someone who’s suffering, you have no idea what it’s like living with Crohn’s. So much happens behind the scenes that makes this disease way more complicated and painful than most people realize. Unaware of many of the symptoms and complications that accompany Crohn’s, people tend to believe having this disease merely means having to go to the bathroom a lot, and maybe having to watch what you eat. Ha! If only it were that simple. This generic information about Crohn’s may come from a friend who has a neighbor with Crohn’s or a coworker who has a nephew with it or the recent commercials advertising different biologics, etc. Regardless of where they heard it, this incredibly basic description of Crohn’s just barely scratches the surface.

Most people don’t have an up-close and personal experience with Crohn’s, so they don’t have any idea what it looks like to live with it. Yet, for some reason, some people still feel comfortable making comments and offering unsolicited advice to Crohnies, despite only having a vague understanding of the disease. These comments can be frustrating, annoying, and can even border on hurtful. I don’t know if it’s ignorance, stupidity, or just a total lack of compassion, but I’ve heard some pretty obnoxious comments. I’ve heard things like, “You’re having stomach problems? So, what? I get diarrhea, too” and “You don’t look sick” and “Ugh, you’re so lucky! You can eat whatever you want and not gain anything!” just to name a few. Really nice, huh?

We don’t want to hear it

You’d think that knowing virtually nothing about Crohn’s would deter people from making flippant comments about it. Unfortunately, I’ve learned that that is rarely the case. These remarks could come from anyone: a stranger at the grocery store, a waitress taking your order, a friend, a family member, a coworker, a boss, the list is practically endless. At the end of the day, it doesn’t really matter who said it, the result is the same. These comments are annoying at best and insulting at worst. Either way, I wish they would just keep their thoughts to themselves!

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Now, not all who make these kinds of comments are insensitive, mean people. Sometimes, they just don’t realize how upsetting a comment can be or that what they’ve said is rude or hurtful. On top of that, there are plenty of times when things are said with the very best intentions, but still miss the mark. These remarks usually come from the people who care about you, who mean well but still just don’t quite know what they’re talking about. It’s easy to see that, in their mind, they’re just trying to help in any way they can. I get it. But, being told that “Mary’s neighbor’s daughter got a fecal transplant and it worked for her, so you should try that,” or “You should stop eating gluten and dairy because I have a friend with a bad stomach and that worked for her,” isn’t helpful. At the end of the day, whether the comments are mean or well-meaning, they both are annoying and exasperating in their own way.

What I wish they knew

There are a few thoughts that flash through my mind whenever someone gives me uninvited advice about Crohn’s. First, what works for some doesn’t automatically mean it will work for all because Crohn’s is so diverse and complicated that no two cases are identical. Second, I’ve most likely already discussed that with my doctor and it doesn’t apply to me. Third, I’ve probably already tried that because I’m desperate to feel better and I’ve tried just about everything.

I know I can’t be the only one who’s dealt with these kinds of remarks, and I’m dying to hear what others have experienced. What comments have you heard that made your jaw drop? What’s the worst unsolicited advice you’ve ever received? How do you deal with hearing these types of comments?

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

Comments

  • bluefenox
    3 months ago

    I have had to stop explaining myself, it just doesn’t make them stop. Sometimes i nod and say interesting I’ll have to try that or just smile a s change the subject.

    The worst yet is the ones who think they know more than someone who has suffered from the disease 30 yrs and all their doctors combined. Did ya know your only faking being sick because you don’t walk 10k steps a day and don’t eat healthy?! It was said to me last week.

  • Paul1701A
    3 months ago

    Unfortunately I’ve heard my fair share of lame-brained advice spouted off by some well-meaning and the not-so-well-meaning people who don’t have a clue as to what are the realities of people who have UC/Crohn’s disease.
    You must develop some thick skin, a good sense of humor, and an active imagination in order to deal/cope with the inevitable offers of unsolicited advice. Do your best to not make it personal. Some people just don’t know any better.
    Perhaps one of the more difficult symptoms to deal with as it relates to other people offering advice, is the perception that you aren’t ill. It’s either said outright or you can sense that the one offering the advice doesn’t believe you when you say you’re ill. I’ve faced this with nurses when I e had to be hospitalized. Fortunately I have a doctor who understands the complexities of Crohn’s and I’ve heard him say on a number of occasions to nursing staff, “You can’t go by appearances with this gentleman. He may look like the peak of health, but he’s very ill. Look at his lab/test results.” Because of his caring and supportive attitude, I have an easier time when I have to stay in the hospital.
    You and your doctor are the only ones who really know and understand the true nature of your disease. Don’t let anyone try to take that away from you. Be willing to be an ambassador and help others to learn what you already know. It’s hard to do, especially when you’re ill and exhausted, but investing in the effort to educate from your viewpoint can win you the help and admiration of those who watch you deal with a difficult physical disease.

  • KimberyLynn
    3 months ago

    From my experience, only having been diagnosed with Crohn’s for about 3 or 4 months, it is surprising how much this happens. Overall, I am lucky enough to have family and coworkers who are so supportive of my Crohn’s, however, as a college student, nothing personal against the person I am referring to, but it is frustrating when you try to explain tardiness and absences for class to a school official; teacher, councilor, etc. … especially when people don’t want to or try to understand. I think this is something that really needs to be read more and others be more knowledgeable of the disease because it is not that “we all have stuff in our personal lives” and we are using this as an excuse, or in my case “leaving for class two hours earlier” doesn’t help… To reiterate, it is just something people lack knowledge of and something that really others should become more aware of.

  • Tracey71
    4 months ago

    Omg, I loved reading that it’s exactly how I feel. I’m newly diagnosed with Crohn’s and Ulcer Colitis and it seems that everybody has something that have to say and they can be down right rude about it. I’ve noticed that I’ve been retreating from everyone and staying to myself more just so that I wouldn’t have to fake feeling well or be griped at for not wanting to eat. It gets old quick

  • thedancingcrohnie moderator
    4 months ago

    I can so relate @tracey71. You are definitely not alone in feeling this way. Sometimes its just more peaceful to retreat and not have to deal with all the noise.

    I hope you are finding relief from symptoms these days. Wishing you the best in health always.

    Always dancing,
    Elizabeth (team member)

  • JessicaH moderator
    4 months ago

    Hi @tracey71, we hear you and completely understand your frustrations. It seems that others always have an opinion, regardless of how well-intended the comments may be, they can be hurtful or just plain annoying. We are glad you found our community. This community understands what you are going through and we are here for you. Please don’t hesitate to reach out if we can ever help you locate any information or if you just need a listening ear. Sending lots of hugs your way. Kindly, Jessica – InflammatoryBowelDisease.net Team Member

  • Alyssa
    1 year ago

    I have had my nan say to me that its all my fault and she has practically forced food down my throat also that I can’t choose what I eat and just deal with it.

  • Alyssa
    1 year ago

    I had sport one day and we have been running around for about 30 mins and this one girl says can I have a break because I am sick. I thought to myself seriously. Then I said to her I am sick but I can manage and yours won’t last all your life. Then she said you don’t look sick and I just got furious, then I replied you don’t have to look sick to be sick and then I walked away. Another time I had a friend over and I was getting out my medication and they said wow that’s a lot of medication I once had to take like five tablets at once. Because they were my friend I didn’t want to go off at them so I just thought to myself I have to take this medication for the rest of my life.

  • thedancingcrohnie moderator
    1 year ago

    You are definitely not alone in this.

    I’ve been told so many things throughout my diagnosis. To me the most annoying is the unsolicited medical advice. That one really can put me over the edge sometimes.

    Always dancing,
    Elizabeth (team member)

  • kygal
    2 years ago

    My favorites are “If you exercised more”or “if you ate right.” There’s “You had surgery, you’re cured now,” and My personal favorite is “You’re not sick enough to not ______ (fill in with whatever someone else thinks you should be able to do.)”

  • gpalmarella moderator
    2 years ago

    @kygal This just goes to show that IBD is definitely an “invisible illness.” It’s a shame that more people don’t understand what it’s like. Thanks for weighing in on the conversation! – Graceann (team member)

  • rjbender
    2 years ago

    I think my most irritating thing said was from a supervisor that said, “Everyone has stomach issues now and then… that’s nothing special so why should your problems make you eligible to telework?!?”

  • gpalmarella moderator
    2 years ago

    @rjbender That is so frustrating! Some people just don’t get it. – Graceann (team member)

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