It Ain't Easy Being Misunderstood

By tmholland

2 min read

IBS is "just IBS" right? If we are to believe everything we’re told, the jokes on TV, the snide comments from relatives, the whole thing.

Avoiding the shame and confusion

I would like to talk today about how to get around the shame, confusion, and frustration that is the IBS experience. I’ve spoken with many people with IBS, both here on the site and those "invisible people" that you just happen to meet (there are a lot of us out there!). But this stays between us here in this community, right? The outsiders need not know of what we speak, huh? That’s a bunch of nonsense. I’m not embarrassed anymore, and neither should you be.

Finding a supportive community

I suppose the first thing that started me on my journey to non-embarrassment (is that a word ;-), was finding this wonder place online called irritablebowelsyndrome.net. Yes, right here! I found stories and kinship and acceptance for what I had just considered this disgusting thing before that.

Community. Understanding. Tolerance. IBS is a disease. It is an illness and I think that most people don’t know that.

Some comedian once said that alcoholism is the only disease that you can get yelled at for having. I disagree. I’ve been yelled at for making too much of IBS. You know, "It’s just bathroom stuff," or "it can’t be that bad." The hell it can’t. It can be that bad and far badder...yes I know.

It can be downright debilitating and we deserve at least some understanding around the subject. Perhaps a little empathy. I’d settle for kindness.

Sharing with everyone here

Once taking advantage of the forums and information here, I started to contribute my thoughts and eventually started writing about the variety of ups and downs that I’ve experienced since being diagnosed in 2014. So there it is. 10 years this year. I hadn’t realized until I started writing.
Yay for me... I know that many of have been struggling for much, much longer and I salute you for persevering and hoping that you’ve found a way to live that helps you more comfortable, more in control and ultimately, happier.

Similarities betweem invisible illnesses

Because I work in the mental health field, many of my articles focus on the psychological issues that IBS can cause. I have found so many corresponding variables between IBS and mental health issues. What is interesting is how similar these two fields of disability actually are.

Because very often people suffering with anxiety, depression, personality disorders and a variety of other psychological conditions don’t appear to have anything "wrong" with them, people just assume that they are fully functional members of society and when it is mentioned that a person suffers with a mental illness, whether it be socially or at work, the room gets very, very quiet. I am positive that the same phenomena occurs with IBS. I have tried it out.

My final thought is that understanding and acceptance are what have helped me through, but in the end as we all know "there is no cure." No, maybe not, but there are an awful lot of things you can do to help yourself. Just take a look around, the answers are there. Till next time.

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

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Kim Dolce Moderator & Contributor
Gosh, I hear you. But nicotine addicts get yelled at a lot more than alcoholics! I am being treated for alcohol addiction as we speak, and I got called out for it by one person, but that's all. I was also a smoker that quit 8 years ago, and I am convinced smokers bear the lion's share of being yelled at hands down. We are the devil's spawn. Serial killers too. We commit manslaughter with second-hand smoke. As far as my IBS, I haven't been shamed for it. I had to hide multiple sclerosis for 9 years to stay employed, until I couldn't anymore. IBS and MS were easy to hide until they weren't. When I started talking about my MS symptoms, people would try to relate. When I talked about IBS, people would instantly relate to me, describing what was clearly anxiety about the urgency to evacuate their bowel. They didn't have an IBS dx, but they had experience with constipation and diarrhea. I don't mind it. I believe it's human nature to try to relate to others' misfortunes as a form of connection and acceptance. Some of my MS and IBS compatriots get upset by this. It's a double-edge sword in my book. In the end, connection is a positive, so I send an appreciative vibe to the listener. Anyway, thank you for your thoughts on the mental health angle. After all, humans experience discomfort because we are equipped with emotion, likely as a survival mechanism. The pain and the pleasure 😀 Best, Kim, moderator
CardsQueen82 Member
Yes! It's absolutely a legitimate illness. We just have to keep being vocal. I think it would also help greatly if the medical community goes on shows like CBS Mornings, GMA, Today, etc., and talk about what we experience, how to support us, and what (not) to say when we're struggling. One thing that's helped me is getting rid of people who don't take my needs seriously.
1. Karina Moderator & Contributor
 <inline-mention username="CardsQueen82" user-id="9740095"/> I completely agree with you. I've also had to stop seeing people who don't want to be understanding as much. It's just frustrating when we're already trying our best and others make it seem as if we were deliberately being complicated. Karina (team member)