Dating with IBD: How Much Should You Share?

I remember the first time I met the first girl I would date. Nothing unusually striking if I replay the moment in my head — not some cinematic moment worth immortalizing, more of an “aw”, something my friends and I would laugh about on a FaceTime call that inevitably went way too late.

At the time, I had recently finished a course of Prednisone and for those who know… you know. Between the facial bloating and sudden acne, I felt uncomfortable in my own skin, awkward even. It made for a pretty cute “meet-cute,” though. I’d never dealt with much acne up until that point, but after I was weaned off the steroid, I was left with acne scars blotched across my forehead and slightly puffy cheeks — which, thankfully, could pass as youthful charm against my features.

She thought I was cute then, which I found out later. But I was, to put it simply, extremely uncomfortable with my appearance. If you’ve experienced prednisone yourself, you know the effects of the steroid last for an extended period of time upon stopping the medication. The weight fluctuations, the crashes in appetite, the rapid changes — all of it amplified the body dysmorphia that already comes with being a teenager, which wasn’t the greatest experience.

My mental health wasn’t great either. Most mornings, I woke up with a pit in my stomach and a craving for sugar that felt like desperation. I felt like the world was ending, I wanted to disappear. I wanted to find myself, but I didn’t know where to look, and the search had already drained me, physically and emotionally. And, well, there’s no better distraction from yourself than meeting someone who excites you — someone who, for a moment, makes you feel less alone. She didn’t struggle with an autoimmune disease, but I was comforted by the sensitivity of our conversations. And maybe, all I really needed was someone to listen. Although I don’t think I was ever fully transparent when it came to my health. I rarely am. Though I do think I shared more than I generally do with any friends, no matter how close. 

This is something many people with IBD (or any chronic condition) face: How much should you share?

You’ll always hear the same advice: “Share as much as you’re comfortable with,” or “It depends on the relationship.” Which is true — but not exactly helpful when you’re living it. So here’s my take, from someone who’s still figuring it out.

I don’t think there’s a right or wrong way to share. Two things can be true:

1. You’re never required to share more than you’re comfortable with. 
    
2. You deserve to be understood beyond your diagnosis.

Personally, I dislike identifying with my disease. I feel that once people know, they often see me through the lens of my IBD, opposed to seeing my IBD through me. It’s mine — a part of me, but does not define me and is not my headline. 

When I first began telling people I had IBD, I over-explained everything. I thought the more detail I gave, the better they would understand. But I learned that sharing isn’t about proving anything. It’s about connection, and sometimes, about trust. You assume once a few people know, everyone will — but the truth is, you’ll share this part of yourself again and again, with every new person who matters. Some people stay for a reason, a season, or a lifetime. But not telling anyone out of fear they’ll leave feels unfair — especially to the ones who genuinely want to know you.

So, how do I tell people I have a lifelong autoimmune disease?
Honestly, I wait for them to ask.

That doesn’t always mean they’ll be direct about it — many times they try to be polite and indirectly ask me how I am. I like to wait until someone shows genuine curiosity. I do this partly because I’m wary of “trauma-dumping” or sharing too much at one time, but mostly because I don’t want to scare people. I don’t want them thinking about IVs and calprotectin tests every time they look at me. Maybe you’ve felt the same.

So yes — I wait for them to ask. And when they do, I remind myself (my biggest tip): you never need to explain yourself. If they want to know more, they can ask. Let them. 

A few examples:

Scenario 1
 Person A: “Why are you going into the city?”
 Me: “I have a procedure scheduled.” (The word colonoscopy grosses me out.)

Scenario 2
 Person B: “Why aren’t you eating with us? Did you bring your own lunch?”
 Me: “Yeah. I have Crohn’s — I can’t digest that.”

You do not owe anyone an explanation, especially regarding personal matters such as your health. If you do not want to share anything at all, don’t. But I’ve found short, confident statements like these usually do the trick. Most people go quiet. If they’re kind and curious, I’ll take a moment to explain. If they’re rude, I say, “Google it.” And if they’re really rude, I walk away. Protect your energy.

But what if you do want to share — really share — with someone close to you? Especially when you’re dating?

That’s different. It depends on you, your partner, and your relationship. If you have external or physical factors (like a J-pouch, surgical scars, or a feeding tube), you’ll need to be more direct about physical boundaries before things get intimate. I don’t personally deal with these, but if you do, it’s something I’d reflect on before entering a relationship

In my first (and only) relationship thus far,  I don’t exactly recall how I shared, but it happened in one blur of a late night conversation where she asked, genuinely, and I decided to share in the safety of our conversation.

My dietary restrictions usually give me away first. They’re not allergies, but I often let people think they are out of simplicity. You probably have your own version of that — the moment where you could brush over it or open up more deeply.

But it mattered to me that she knew, so I told her. Not everything, not the medical details — just enough to help her understand.

— Anonymous Teen Patient, Crohn's Disease

Editor’s Note: All OurIBD blog stories are written by anonymous patients from around the world. Each piece is lightly edited and formatted by our team to maintain readability and consistency while preserving the author’s authentic voice and message.

If you’d like to share your own story, you can submit it through our form here.