From the Community: What Do You Wish People Knew About IBD?

It can be difficult for people without IBD to understand its symptoms or how uncertain tomorrow can feel. The Bezzy community gets it.

If you have inflammatory bowel disease (IBD), it can often feel like your friends, family, and co-workers don’t understand what you’re going through. It can be isolating to feel like those around you can’t comprehend your experiences.

And while your loved ones probably mean well, misguided comments and suggestions can make you feel even more alone.

Here at Bezzy IBD, we get what you’re going through. Members of the community shared what they wish others understood about Crohn’s and ulcerative colitis.

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It’s not our fault

“I wish people knew that we don’t cause it. I have been told numerous times that I do this to myself. I want more than anything to be normal again and not be labeled as a sick person.

I want others to know we are constantly living in guilt, and it will mean a lot to us if you can simply be a little more caring when we have to cancel plans, even at the last minute”. — Gamtnmimi6

When you have to go, you have to go now

“I wish people understood the downs of having to use the bathroom immediately at any particular moment. There is no waiting!” — Dibby-Di

There’s no quick fix

“Don’t say: ‘Have you tried this? I think it could really work for you.’” — Holly Fowler, 6 Things That Aren’t Helpful to Say to Someone with IBD — and What to Say Instead

It can be easily triggered

“I wish they knew how debilitating this disease can be and how easy it is to get a flare-up. Stress is a major trigger.” — Moretz

It’s a life changer

“Other people should understand that IBD is a life changer. It involves a lot of painful and embarrassing situations that healthy people wouldn’t think about. A lot is affecting our body, life, and family; even though externally we look fine, inside we live day-by-day, and our health is always changing.

Health is a precious treasure that nothing can bring back if you lose it. There’s no cure for IBD, and we struggle daily.” — Newly

The takeaway

When you have an invisible illness like IBD, it can be challenging to explain your condition to others. It’s not always obvious when you’re in pain or experiencing a flare.

The Bezzy IBD community understands. Feeling seen, heard, and understood can make a huge difference in your health journey.

Talking with your loved ones about your condition can go a long way in improving your overall well-being. If you need some advice on how to start those conversations, read our article 7 Tips for Talking with Friends and Family About Your Chronic Illness. 

As always, we’re here for you at Bezzy.