We think of inflammatory bowel disease (IBD) as being a disorder of the digestive tract, but anyone who has IBD will tell you that it affects the entire body. Something that is often overlooked when dealing with digestive disease is how it affects our emotions. Some people with Crohn’s disease or ulcerative colitis find that there’s one emotion overwhelmingly associated with the disease: guilt.
Why Do We Feel Guilty?
Most people pride themselves on their ability to work hard and be independent. When we are ill or we need help, we tend to feel that we are not living up to the expectations of others or the high ideals that we set for ourselves.
IBD is notoriously unpredictable. Not only do people who have IBD not know when a flare-up of their disease is going to hit, they also do not know what treatment is going to be successful at stopping the inflammation. A plan that worked in the past may stop being effective, forcing a change. A new treatment plan means uncertainties about efficacy as well as coping with potential new side effects.
All of this constant change and readjustment is difficult for the person who has IBD, of course, but it also affects everyone around them. Spouses, children, caregivers, co-workers, and other friends and family may need to pick up the slack while the person who has IBD works on improving their health. Loved ones often want to help and don’t intend to cause more stress, but the person with IBD is aware of the increased pressure, which may result in feeling guilt over being sick. Feeling fatigued and being unable to work or take part in normal family life is common during a flare-up or during recovery from surgery, and watching someone else struggle under the burden of extra responsibilities may lead to self-reproach.
Dealing With Feelings of Guilt
Feelings of guilt over being ill are common, and there’s not going to be a way to eradicate them completely. However, it is important to deal with strong emotions, in order to avoid further negative affects on health. Thinking about the situation rationally and dealing with the guilt may prove helpful.
Recognize when guilt is not productive. There is such a thing as “healthy” guilt — doing something truly wrong should elicit feelings of guilt. Being sick through no fault of your own, however, is not a healthy reason for feeling guilt. We don’t know the exact cause of IBD, but it’s likely from a complex interplay of genetics and environment. No one can choose their genes, and we are all exposed to environmental causes of disease simply by going about our daily business. You didn’t bring the IBD on yourself, so you should try to let go of the guilt that you may have done something wrong.
Make changes to your thought process. If the tables were turned, and it was your loved one who was ill instead of you, would you want them feeling guilt? Would you become the caregiver when necessary in order to give them the best chance at better health? Putting yourself in the place of your friends and loved ones may help you to get some perspective surrounding your feelings of guilt. You may be taking more responsibility for others’ feelings than is necessary.
Have an honest conversation. If you feel guilty about not being able to do the shopping, or are worried about using up all of your sick time at work, bring it up with the people who are affected by your illness. Do the people around you feel resentful about your illness? They might be upset from time to time too, but that resentment is also a feeling that needs to be recognized and aired out in the open in order to get rid of it. You will probably be surprised at how much better you both feel after clearing the air about the negative feelings you are having about the IBD.
Forgive yourself for having IBD. This may sound ridiculous, but forgiving yourself is an important part of dealing with your illness and the problems it causes. Having IBD is not something that you can change. If you can’t change a thing, all you can do is change how you react to it. Forgive yourself the little things that you’d like to do but are unable to when you’re not feeling well. Taking care of yourself is the best way to getting back to your regular routine, and participating in your life in the way you have when your IBD is in remission.
Seek help when you need it. Chronic illness, such as IBD, tends to be associated with depression. If you find your thoughts spiraling out of control, and your feelings of guilt overwhelm you, it’s time to seek outside help. That can take many forms, from getting help with child care, errands, and household chores, to talking with a mental health professional or a family counselor. The same is true for those around you — if your loved ones feel overwhelmed, it is time to find outside help. Your gastroenterologist or internist can help you find a professional that has experience in treating people who have IBD.
Having IBD is life-altering, no matter when it happens or how long you’ve lived with the disease. You are going to feel so many emotions about your IBD and it will dredge up other situations and feelings in you and in those close to you. It’s to be expected but that doesn’t mean it’s going to be easy or simple to deal with the complexity. Having open, honest conversations is hard, but it’s really worth it in order to support your relationships with family and friends and to ultimately be stronger in the end.