Feeling Guilty for a Disease You Didn't Ask For
Guilt is an issue that far too many patients deal with. While guilt plagues many dealing with chronic illnesses, more often than not, it’s unnecessary. Guilt plagues us when we cancel plans. Guilt plagues us when we are too sick or lack the energy to get out of bed. Guilt plagues us when we are unable to spend time with our friends. Guilt plagues us when we miss family outings due to our health. With people calling us lazy or self-consumed, it’s no wonder we have guilt. It hurts, but it’s not true.
Too many people fail to realize that it’s not our fault we are sick. Sure, people say things like, “well, if you hadn’t done this” or “if you didn’t eat that…” you wouldn’t be sick now. It’s not true, but when we’re told something enough times, we begin to believe it ourselves. Inflammatory Bowel Disease (IBD), such as Crohn’s Disease and ulcerative colitis (UC), is considered to be an autoimmune disease. Genetics also plays a role – for instance, my mother lives with Crohn’s and so does my aunt. While we don’t know what causes IBD, it certainly isn’t something you did or didn’t do.
People fail to realize that we’re not lazy or anti-social. Because your body is fighting itself all the time, your energy levels remain low. People with UC or Crohn’s wish they were able to get out and be socially and physically active. They just don’t have the energy. Add that on top of the fear of having an accident in public and you have a recipe for disaster. It’s maddening for patients. They don’t like being stuck at home, but many of them have no other choice.
You should not feel guilty for staying home. Again, your body is in a constant battle. Sometimes you need to rest more–and that is totally ok! Your body is putting all it’s energy into fighting. Chronic Illness is something you just can’t help! You need to advocate for yourself. Educate yourself on your disease! Speak up. Do your best to explain to those around you what’s going on. If you don’t, who will?
It’s the fear of speaking up that causes so much misinformation. It’s the reason why people don’t understand what’s going on. Lack of communication or speaking up is why people think IBD is no worse than a stomach bug. But we, as patients know the truth. Tell them about the joint pain, anemia, vomiting, sleepless nights, infections and intestinal inflammation. Send them articles, videos, whatever it takes to help educate them on your own illness.
What if you try to educate people until you’re blue in the face and they still don’t understand? Move on. Life is too short to waste your energy, breath and time on someone who refuses to offer their sympathy or compassion. The truth is, you can’t possibly make everyone understand. In those situations, find someone who will. Because people who care exist and those are the people you want in your life. You want someone who will fight with you and for you, not against you. You want someone who will validate your pain, not deny its existence. You want someone who will be compassionate to the fact that you can’t always be there, instead of making you feel guilty for an having illness that you didn’t ask for.
Do you keep a food diary to help manage symptoms?