Caring for Crohn's & UC

What Not to Say to an IBD Patient or Caregiver

November 5, 2012 at 7:47 pm Rebecca K. Leave a comment

In the almost six years that I have been with Dan, many stupid things have been said to me about the disease. Usually, I just brush it off because I am not the one living with the disease every day.

This post comes after I read a piece in Health Magazine entitled “11 Things Not to Say to Someone with Ulcerative Colitis.” Crohnies hear the brunt of the dumb things that are said about the disease, but us caregivers definitely hear some also.

Below is a list of some of the things that have been said to me that you really shouldn’t say to an IBD patient or caregiver (or really anyone with a disease). Disclaimer: you may not agree with every one I put on the list. This is just made up of ones that annoy me (and I may become annoyed more than others). What is okay or not okay to ask  or say is totally subjective and varies person to person.

1. He/She doesn’t look sick

You’re right, Dan generally doesn’t look sick. He did when we first met because he was severely malnourished and skinny. But now, at 143 pounds, he looks healthy (knock on wood).

Crohn’s and UC are “invisible” diseases. That means the diseases don’t manifest themselves on the patients exterior but rather are internal diseases. So unless Dan gets violently ill or winds up in the hospital, you can’t tell he’s sick.

That being said, don’t tell me that he doesn’t look sick. I live with him. I know that he doesn’t look sick. Telling me that doesn’t make me feel better. It just makes it more obvious how little people know about IBD and other invisible diseases and how the impact every facet of our daily life.

2. I’m sorry

I am one of those people who HATES when people say “I’m sorry” to something that isn’t their fault. I know you mean well and you say it because you aren’t sure what else is appropriate but personally, I’d rather you say nothing than say “I’m sorry.” It just points out that something is wrong and people feel awkward around you because of it.

3. That must be so hard on you

Yet another thing that I’d rather not hear. Yes, it is hard to take care of someone with Crohn’s Disease from time to time. I’d rather you not point that out to me.

4. How do you do it?

This might be the worst offender on the list in my opinion. For us IBD caregivers, what other choice do we have? Our spouse/sibling/child/friend/relative has Crohn’s Disease or Ulcerative Colitis. We aren’t going to let them suffer on their own; we are going to be by their side the entire time. During the bad times, it can be exhausting. The ER trips, hospital stays, doctors visits, the financial stress- it all adds up. But those aren’t constant- Dan and I have lots of good times in which we poke fun of the disease and go about our lives as if it weren’t the elephant in the room.

Bottom line: By marrying someone with Crohn’s, I chose a life with the disease. I don’t know how I do it sometimes and I’d rather you not ask me that.

5. Can’t he/she just suck it up?

Imagine being stabbed in the stomach repeatedly. Imagine someone squeezing your stomach, twisting it into knots. That’s how it feels when Dan has cramps. When he has them, a strong urgency to use the bathroom soon follows. So no, he can’t just suck it up. If he tried to, a mess may very well happen soon after.

6. My [parent/sibling/spouse/friend/aunt/uncle] has Crohn’s Disease/Ulcerative Colitis.

One of my fellow Crohnie caregivers suggested this one to me and if she hadn’t, I would have totally forgotten. I am totally open to hearing about the people you know with the disease. But don’t try and relate it to our individual battle. IBD is a disease that is unique to each individual. What works for one person may not work for another. So please don’t say this and then try to tell us medications that work or diets to try. That’s what we have a doctor for.

I want to make it clear that I am not discouraging people from asking questions or trying to talk with me about the disease. I am more than happy to talk about Crohn’s Disease and my patient. But there are some things that are good to say and some that aren’t.

In that same vain, here are some things that I welcome people to ask or say to me. Again, this is all subjective and varies by each individual caregiver.

1. What exactly is IBD/Crohn’s/UC?

Not many people are familiar with Crohn’s or UC. If you aren’t, please don’t be afraid to ask what it is! I’m more than happy to explain the disease to those who are unfamiliar.

2. How is he/she feeling?

Dan has good days and bad days. Everyone in our life understands that. Asking how he is feeling shows an understanding that not every day is the same and that you care about his well being.

3. What can I do to help?

Asking how you can help is one of the most selfless things someone can do. While there may not be much that can be done, just giving me that option shows me that you care and are willing to be there in a tough situation.

4. How are you feeling?

Crohn’s Disease and UC is an individual fight. But asking how the caregiver is doing is something that not many people do. I go through phases with how I am doing- some days I’m fine, coping with Dan’s illness isn’t phasing me. Some days I am angry that Dan has to deal with this crappy (pun intended) disease. And some days I am worried, especially if Dan is in a lot of pain, having a medical procedure, or in the hospital. Asking me how I am doing is selfless and shows that you understand that this illness affects everyone involved, not just the patient.

What questions do you hear the most from people?

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Entry filed under: Caregiving. Tags: crohn's disease, Crohn's Sucks, ibd, invisible disease, uc, ulcerative colitis.