WHAT IT'S LIKE TO HAVE IBS
It’s hard to communicate to the people in your life about what it’s like to live with IBS. There are several reasons for this.
First of all, talking about problems with your GI system is socially taboo. It’s a topic you’d associate with an infantile comedy routine, not with a conversation between two coworkers, or two people out on a first date.
Secondly, like many chronic conditions, it changes how a person gets through their day. It makes simple daily routines, like going to the bathroom, or ordering food, complicated and difficult. When your day is different from everyone’s around you, it can be very isolating and hard to explain.
Unfortunately, people with IBS often find they have to explain over and over again. In restaurants, in the office, on trips, and at home. Because even though 20%+ of the population suffer from some form of GI difficulty, the other 80% have a mental block about believing it’s really real.
Or that it’s really as bad as people say; that there’s a genuine difference between having a ‘bad stomach’ for a few days and having a chronic condition that affects your whole life.
This brochure will help you help whoever gave you this brochure find ways to live as normal and uncomplicated lifestyle as possible... and not let IBS run or ruin their life.
1) IBS IS A HIGH MAINTENANCE CONDITION. You can’t take a pill and make it go away. It takes constant effort to keep it from getting worse. Things like questioning a waiter about the ingredients of every dish or always checking to make sure there is a bathroom nearby may seem inconvenient. But they’re nothing compared to the inconvenience of triggering an IBS attack because you ate wrong, or couldn’t get to a bathroom in time.
2) IBS IS NOT TEMPORARY. It's not something you get over in a few days or even weeks. You may never get over it.
3) I’M NOT A PICKY EATER, I JUST DON’T WANT TO GET SICK. Please don't push foods I’ve already said "no thanks" to. I know what my stomach can and can't handle.
4) WHEN I’M HAVING AN ATTACK, I NEED SPACE. Please give me my space when I’m in the bathroom. I appreciate your concern, but you can't help, and hovering around just compounds my embarrassment.
5) THE RULES ARE ALWAYS CHANGING. And so are the symptoms. Medicines, or herbs, or a special diet that was helping to keep a person’s IBS symptoms toned down may suddenly stop working. New symptoms often appear out of nowhere. Foods that didn’t bother a person with IBS for years could suddenly trigger a vicious attack. One of the reasons IBS is so difficult to explain is that it keeps changing.
6) I’M NOT USING IBS AS AN EXCUSE NOT TO DO THINGS. Making plans to go out can be really scary when the symptoms (and the rules) can change at anytime. Please respect that there are times when I can’t go out, even if I want to. And please don't look at me funny when I ask if the place we're going has a bathroom. Understand that this condition is completely unpredictable. If we go out together, be prepared for me to run off at any moment to find a bathroom.
7) PEOPLE WITH IBS DON’T TALK ABOUT IT TOO MUCH. There is nothing a person with IBS would love more than to only have to explain their health condition, and their health needs, once and only once. Unfortunately, most people don’t get it the first time. Or they think it’s just a temporary problem that will go away by next time. So IBS sufferers find themselves having to bring up the subject the next time. And the next time.
8) PEOPLE WITH IBS ARE NOT OBSESSED WITH THEIR BOWELS. Have you ever heard of an asthma sufferer who was trying to explain their condition being called ‘respiratory- obsessed’? Or someone describing their heart condition being called, “cardiovascularly- obsessed’. Because our GI systems are such a taboo subject, people who try to explain their GI problems are labeled, ‘Bowel-obsessed’. Sometimes by their own doctors!
9) IBS IS NOT CONTAGIOUS. I'm not going to make you sick. And if I’m in a relationship with you I still need you to hug me and love me.
10) IBS IS NOT ‘ALL IN OUR HEADS.’ It’s true that stress can compound the symptoms. But the "all in my head" routine makes us feel like we’re being called crazy. Believe us, we’re not crazy… we’re just not feeling well.
11) DON’T TAKE MY CONDITION PERSONALLY. Just because I don't want to go out doesn't mean I don't want to spend time with you. I can't always go places where there are no bathrooms, but maybe we could go someplace that does.
12) I CAN’T ALWAYS HELP BEING LATE. If I'm late, it’s not because I didn't plan or didn't care, I just can't help it. If I'm not where I said I'd be when I was supposed to, I might be around the corner in the bathroom, but trying to get there.
13) I CAN’T CONTROL HOW OFTEN I GET SICK. And if I wasn’t putting in a constant effort to keep my symptoms toned down, I’d be getting sick even more often. Please don’t make me feel worse than I already do by accusing me of ‘always being sick.’
14) SOMETIMES, THE ONLY THING THAT HELPS IS SPACE. If I don't feel like being with anybody, that means *anybody*, not just you.
Whether you are a family member, friend, or coworker of someone with IBS, your understanding is very important to them. When a person develops IBS, their body becomes a very difficult place to live in. By taking the time to understand IBS, you have helped to make their environment an easier place to live in.
Taken from the IBS Self Help Group Bulletin Board – www.ibsgroup.org