What People With IBD Won't Tell You


They Don't Want You To 'Fix' Them

Multipurpose Tool
People with IBD aren't necessarily looking for a fix to their problems: they've usually already tried many different diets and treatments. Image © Jonathan Kitchen / Creative RM / Getty Images

Having a form of inflammatory bowel disease (IBD) opens a person up to all sorts of opinions. Most people mean well, and they want to help. However, people with IBD aren't always interested in hearing a story about another person with IBD who "got better" by changing their diet or by taking a supplement. Most people with IBD have tried everything under the sun to improve their symptoms—they already know what works for them and what doesn't. Someone with IBD may nod along to your suggestions and thank you for your concern, but this is usually out of politeness. Most people with IBD are already experts in their disease, and they've already tried it all.

Instead, ask if there are ways to help, such as running an errand or picking up dinner.


They Sometimes Have Accidents

Man Running To Toilet
Bathroom accidents can happen to just about anyone, but most people aren't ever going to discuss them, even with a best friend. Image © Peter Cade / The Image Bank / Getty Images

Bathroom accidents can sometimes even happen to healthy people who have diarrhea from food poisoning, gastroenteritis, or some other cause that will go away on its own. People with IBD might experience accidents too, especially if there is bad diarrhea resulting from a flare-up of the IBD. It's estimated that more than 70 percent of people with IBD experience incontinence, which is when the leakage or passage of stool isn't well controlled. When IBD friends get together, they often talk about having accidents and how to handle them, but it's not something they are necessarily going to share with a lot of other people, for good reason.

Instead, offer to help find a bathroom or bring a change of clothing in case there is an emergency.


They Might Not Tell the Whole Truth

Woman Telling Lie
People with IBD might find themselves fudging the truth on occasion, to try to get by in their life. Image © Jan Scherders / Getty Images

People with IBD are put in precarious positions because their health status is often unpredictable. Sometimes the choice is between doing what is healthful and doing what will make other people happy. People with IBD might find themselves making excuses or trying to act like they're "fine" when they're really not doing very well and need to take it easy. Breaking plans sometimes happens, and it's not about anything other than not being well enough to go out.

Instead, offer an understanding ear, and let it be known that it's OK if plans change—you know that it's only because IBD comes with unpredictable health.


They Don't Want to Talk About Their Diet

Pasta Dish
Food is a topic that causes a lot of concern for people with IBD, but sometimes this is because other people have a lot of opinions about what they're eating. Photo © Serge Bertasius Photography / FreeDigitalPhotos.net

When you have IBD, one of the first things people point at for being either a "cause" or a "cure" is diet. From the outside looking in, it's easy to make judgments about what someone is eating. However, diet has not been shown to cause IBD, and because the disease is so different from person to person, diet for people with IBD has huge variations. People with IBD have often spent quite a lot of time figuring out what they can eat and what they can't. They may even see a dietitian or a nutritionist on a regular basis for advice. While in a flare-up or while having complications, some people with IBD might have to get very selective about diet. It becomes important to eat in a way that won't cause further problems, and it has no bearing on anything other than that.

Instead, asking what might be a good dish to serve at a party will make a person with IBD feel included.


They Worry About People Giving Up on Them

Lonely Woman
People with IBD are no strangers to loss, and sometimes we wonder when the next friend or lover will give up on us. Image © ronaldregidor / Creative RF / Getty Images

IBD is good for one thing: it can bring out the very best or the very worst in people. Everyone with IBD has a story of a friend or a loved one who had real difficulty with the diagnosis and how this fractured their relationship with that person. The reasons that this happens are many and varied but the end result is that people with IBD may wind up being very cautious about starting new friendships and they may worry about continuing the ones that they have. Other people may misinterpret this as being aloof or a "loner," or even that there's not a need for friends or companions. There is always a need for loving relationships, the problem is that they can be challenging to forge, and heartbreaking if they end.

To try: Let your friend know that you are there for the long haul, and no prednisone mood swing is going to get in the way of a friendship.

Was this page helpful?

Article Sources