Disappointing Others Because You Are Not Better

Those of us who suffer from at least one chronic illness probably have people in their life who always seem to wonder why they are never “better.” I know there is always a ton of misunderstandings surrounding most chronic conditions, with Crohn’s Disease and ulcerative colitis being no exception.

Some examples include:

1. Many people believe having inflammatory bowel disease (IBD) is the same as having irritable bowel syndrome (IBS). This misunderstanding leads to people offering advice because they have or know someone who has IBS and a certain diet change, supplement, exercise, etc made everything a lot better for them. Therefore, they wonder why you are eating foods that are an absolute “no-no” for people suffering from irritable bowel syndrome. This leads to the IBD sufferer to feel like they aren’t doing everything they can to get “better” and be “fine” just like their loved ones keep hoping for.
2. Even though ulcerative colitis (UC) and indeterminate colitis are not the same as having “colitis,” many people think it is. Colitis means inflammation in the large intestine or colon. This type of inflammation can come from a wide variety of things including food poisoning and an infection in the body that is cleared up within a week with antibiotics. I have personally heard a lot of people tell me that they had colitis but chose to treat it with some diet or supplement and are now a lot better. Those people wonder why I “chose” (ha!) to go the medicinal and surgical route to control my disease.
3. Inability to accept that a family member or close friend lives with a chronic illness aka one that is never going away can also cause these types of feelings. It is “normal” for a person who cares for another to ask how their loved one is doing. However, when you constantly feel like you are letting someone down by telling the truth, it can cause a lot of mixed emotions which may eventually lead you to not wanting to open up as much.

I feel like I am always disappointing someone

I always wonder if it is just me who experiences this but I feel like I am always disappointing someone in my life when they learn I am still struggling or unable to make a planned event because of my health. In all honesty, when I get asked if I got out today when I am in extreme pain and haven’t slept, sometimes I feel like a bitter disappointment that I didn’t get my lazy as* up and get out of the house.

While I rationally know I cannot control the fact that I live with multiple chronic conditions, I also don’t want to keep repeating the same thing, while feeling like I am breaking someone’s heart for being truthful. I don’t want to say “I will never be better” because it sounds like I am being a downer and I do remain hopeful that I will have periods in my life filled with more good days than bad.

I don't want to feel even worse

Between needing to miss out on so many things, having to rely on others for pretty much everything, and needing to undergo so much physically because of my inflammatory bowel disease, I don’t want to feel even worse. And to be very blunt, when I am constantly being asked how I am doing, only to be honest and have someone feel so badly for me, it hurts me.

I know this is one of those situations where no one is to blame. It is hard for everyone: patients, caregivers and their loved ones. I just wanted to bring it up in case anyone may be feeling alone with this.