Inflammatory bowel disease (IBD) is a complicated and frustrating condition, not only to those who have Crohn's disease and ulcerative colitis, but also to those who love them. IBD does have an emotional side to it, and a seemingly offhand remark can lead to hurt and misunderstanding. People with IBD are like everyone else -- they deserve respect and understanding. When you have a chronic condition, the people around you tend to try to offer help and solutions. Certain advice can be helpful, but other comments can be harmful. Below you'll find some of the more irritating comments and questions that people with IBD encounter on a regular basis.
1. But You Don't Look Sick...
Someone who is sick with a cold or the flu tends to really look ill -- watery eyes, drawn face, bags under the eyes. Chronic illnesses such as IBD, arthritis, or thyroid disease don't always show on a person's face. There are times when IBD can make a person very ill indeed, but that doesn't necessarily translate to looking outwardly ill. This is particularly true for the young people who have IBD, because they may actually look like they are in good health, even though they are managing severe IBD symptoms. In addition, people who have IBD are masters at going about their daily lives despite how ill they feel, because if they stayed at home every time they felt bad, they'd never hold down a job or finish school. How a person looks is not a reliable indicator of how sick they truly are.
2. Are You In The Bathroom Again?
A person with IBD may answer this with: "Yes, I am in the bathroom again!" Sharing a bathroom with someone who has IBD can absolutely be a strain on any relationship, be it a married couple or just roommates. When someone with IBD is in a flare, they sometimes need the bathroom on an emergency basis, perhaps several times a day. You might be getting frustrated over this, but remember that they're not trying to irritate you, or make your life difficult, they really do need the bathroom!
3. You Would Feel Better If You Just Relaxed
Stress and IBD have a very complicated relationship. Stress does not cause IBD, but people still sometimes think that it does. However, like any other illness, stress can make IBD symptoms worse. People who have IBD need positive ways to deal with the problems of everyday life. As a friend or family member of someone who has IBD, you can choose to help with stress relief. Helping with daily tasks or offering emotional support will help someone with IBD to cope with stress.
4. You're Lucky -- You Always Stay So Thin
Many people who have IBD are, indeed, very thin. As a matter of fact, in many cases they can be too thin, and it's certainly not on purpose. Some of the symptoms of IBD, such as diarrhea, lack of appetite, and pain, may make it difficult to maintain a healthy weight. Getting regular exercise can also be a problem because of the extreme fatigue that goes hand-in-hand with IBD. Being too thin comes with its own health challenges, and many people with IBD would prefer to be able to put on a little weight.
5. Can't You Just "Hold It"?
And the answer to this question is probably: "No, I can't!" As much as we all don't want to talk about it, or even think about it, bathroom accidents can, and do, happen to people who have IBD. There may be times when someone who has IBD is experiencing diarrhea to the degree that they may have an accident if they can't get to a toilet right away. During these times, it might be impossible to wait to go to the bathroom.
6. Should You Be Eating That?
There is no particular diet that will help everyone who has IBD; diet is highly individualized. Some people with IBD may be on a restrictive diet, either because they are flaring or recovering form surgery, or because they have worked out the diet that is best for their health. As we all know, it can be difficult to follow an eating plan, even when we know that deviating from our diet can result in digestive symptoms. Unless someone with IBD has specifically asked you to help them with their diet, it's probably best to let them make their own mistakes, or at least tread very lightly on the topic of diet.
7. Have You Gained Weight?
Of course, this is not something that is appropriate to say to someone at any time, but it can be especially hurtful to someone with IBD. Some of the medications used to treat IBD can cause weight gain, among other distressing physical side effects. While some people with IBD may want to put on a few pounds, the weight gain that occurs as a side effect of medication tends to be centered only in certain areas of the body. This can leave a person who has IBD with a poor body image, and reminding them of the changes in their body can be very upsetting.
8. Why Are You Always So Tired?
Fatigue is a very common problem. Our complicated, busy lives leave us little time for proper rest and relaxation. IBD is a disease that can really sap a person's energy. During a flare-up, it can become a heroic effort to put in a full day at work or school, let alone keep up with a busy social calendar. Don't feel insulted if a person with IBD is too tired to meet you for drinks or take in a movie. Fatigue is just par for the course, and more low-key get-togethers may be the way to go until your loved one is feeling stronger.