Not many people know what IBD is at the time of their diagnosis, and I had a lot of questions about Crohn’s Disease when I was first diagnosed, but there are some things that I wish I had known sooner.

This Is a Serious Disease. Like, Really Serious!

While I might laugh at Crohn’s sometimes, I find that people who can’t relate tend to downplay IBD, often relegating it to merely a “toilet disease”; the fact is, IBD is some serious shit! While rare, people have died from complications stemming from treatment, surgery or from the illness itself, but even those with “mild” cases (which is like describing a “cold” fire), often still experience debilitating pain and/or fatigue.

Knowing how bad it could get might have helped to prepare me for what was in store.
IBD Can Be Extremely Isolating

What better way to keep you locked at home than the fear having an accident (a.k.a shitting yourself ) while in public. And what about all those friends you use to hang out with? They’ll likely stop calling you after the 30th time you’ve had to cancel plans because of stomach pains or nausea.

Even worse is the fact that you could be surrounded by your family and still feel completely alone because you’re too sick to interact. I’ve compared this to living as a ghost.

I wish I had known just how isolating this illness would be so I could build support lines before I lost control.
Most People Won’t Understand

Let’s face it, not everyone is a Gastroenterologist (despite all the “useful advice” they give), and not everyone you know will even be able to relate to life with an Inflammatory Bowel Disease, but this lack of understanding is hard to deal with.

Comments like “you don’t look sick” or “have you tried…” only reinforce the idea that better awareness is needed, and it can’t come soon enough!

I wish I had known how to better handle this kind of conflict between people who either purposely, or ignorantly, take shots at my illness or my ability to manage it.

Now, over six years later, I’m more knowledgeable and can handle these situations with more finesse, but it wasn’t easy to get here in the dark.

Question: What are some things you wish you knew about IBD when you were first diagnosed?