Explaining IBS When People Don’t Seem to Get It

I used to never speak about my IBS and hope that no one would notice. It was hard, isolating, and led people to think that I didn’t want to hang out with them after I declined the 7th dinner invitation in a row.

I definitely think that being honest about your IBS is crucial, but that doesn’t make it easy. Especially when you’re an introvert like me and don’t like sharing too much of what you’re going through with everyone.

The first step is still the easiest: you tell them that you have a digestive condition. So far, so good. They might be understanding, feel bad for you, or suggest that it’s just related to stress. But they’ll get it.

Then comes the hard part: explaining what it means for you.

Explaining trigger foods

My best friend still thinks that I’m dairy and gluten intolerant. I’ve tried to explain it to her a million times, but she doesn’t understand that I can have certain forms of dairy, but not milk, that I can eat pasta, but not a whole sandwich. She also doesn’t get that there are approximately 5 thousand other trigger foods that make my life harder.

Now I think that I started the whole explanation process the wrong way. I should never have used examples like dairy for trigger foods, as people associate them with dairy intolerance far too quickly. I should have taken the time to explain that there is a whole list of trigger foods, that they have no apparent connection to one another, and that my list keeps changing with time.

IBS is a complex condition that takes us sufferers years to figure out. So it’s no wonder that people don’t get it after a 5 minute simplified explanation. Especially when they don’t know anything about IBS, they associate it with something they know, like an intolerance.

My tip for this is something that I still have to follow myself: take the time to actually explain your condition, even if it takes more than 5 minutes, especially to people close to you. It will be well worth it in the long run.

Explaining flare-ups

People who don’t have IBS have trouble believing how bad symptoms can get. I’ve been living with my boyfriend ever since I was diagnosed, and still, it took him ages to understand that a bad flare-up made me feel no different than the stomach flu. Lately, I’ve actually been explaining it just like that: a condition that triggers the same symptoms as a stomach virus. At least it’s clear.

His family is no better in this department. His parents continuously refer to my trigger foods as “foods I don’t like”. It’s frustrating, really! It’s not true that I don’t like these foods. And I would never dare to be that complicated with food if I didn’t absolutely need to. I don’t think they understand what I go through if I eat something wrong.

But in the end, I made peace with this. Every time I get frustrated with such a comment, I remind myself that I’m happy for them. I’m happy that they don’t have to go through this. Even if they believe that I’m just being fussy, they still make tons of efforts for me and I should be grateful, not annoyed.

What helps a little is to respond once in a while by saying that I do like the foods, but my gut really doesn’t. But then they still say that it’s probably all in my head, anyway. Which leads me to my next point:

Explaining anxiety

Explaining IBS-related anxiety feels like the hardest part, at least for me. The only person who really gets it is my boyfriend. And that is only because he witnesses all my anxiety attacks and has learned to recognize and understand them. Thus, he is also the only person who knows what to say in these situations (“We can leave the moment you don’t feel well, and we’ll be at home in 15 minutes so there’s no risk at all”).

Even my family, my parents and grandparents, who are very understanding and try their best, don’t get it. I don’t see them as often, and so it’s harder for them to comprehend, although it does get better with time. They don’t understand why I need to be quiet and listen to calming music when we go on a car journey in the morning (mornings are the worst). They don’t always get that it’s not a coincidence when I get symptoms right before having to leave.

When they suggest eating at a restaurant, they often believe that it’s enough to choose a restaurant that serves Karina-approved foods. How could they relate to my reluctance to go? They don’t know that I’ll be so anxious in advance that I won’t feel good, and that I’ll have to sit through a whole meal when the last thing I want to do is eat. How can they understand that eating out only works for me when it’s spontaneous and my brain doesn’t have time to freak me out?

I think that as IBS sufferers, we need to be patient with the people around us. We need to remind ourselves that they’re doing their best to understand. But they can’t know the condition as well as we do. They’ll get there eventually, but it just takes time.

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