Living with an inflammatory bowel disease (IBD), such as Crohn’s disease or ulcerative colitis, is a constant battle. It is a battle that may leave the warrior in that battle thin, tired, bloated or just miserable in general. However, this disease can also show little symptoms for the outside onlooker and the person with an IBD is simply quietly managing their pain. That being said, it is impossible for someone not experiencing an IBD to understand the struggle and because of this certain comments are simply unwarranted, unwanted and sometimes rude and hurtful. Here is what not to say
1. I didn’t realize you were so sick, you look fine.
As a rule of thumb with any disease, don’t assume someone is not sick because they “look fine.”
What you don’t realize is that the well groomed, smiling, “normal-looking” person before you may have had an intense battle to get that way just hours before. Do not marginalize an IBD because someone is a fighter and doesn’t let you see their pain at all hours of the day.
2. I know what you’re going through
If someone with an IBD vents about what they are going through do not try to compare your bouts with upset stomach or even Irritable Bowel Syndrome (an unrelated condition) with what they are experiencing. Unless you actually have an IBD don’t say that you can relate or your likely to be met with an well-deserved eye roll.
3. You’re so lucky; you can eat anything and stay skinny / You’ve lost weight!
Thanks but no thanks. We are so obsessed with body image these days that we fail to recognize that possibility that someone with a disease that is experiencing rapid weight loss is probably suffering a great deal.
Rapid, weight loss is often the result of a flare-up. Flare-ups that cause severe abdominal pain, bloody diarrhea and many hours in the bathroom. You cannot simply “eat anything you want” in fact you need to choose very carefully what you can eat to avoid worsening the situation.
4. You’ve really put on weight!
In very few circumstances will those words result in a positive response, especially when uttered with someone with an IBD like Chron’s Disease or Ulcerative Colitis. (Are we seeing a pattern yet, “Don’t bring up weight at all”, very good class…)
One of the most effective short-term medicines for quickly stopping a flare-up is Prednisone. Unfortunately, Prednisone has several side effects, including weight gain. Another side effect is “moon face,” in which the cheeks get rounded, making for a chipmunk-like look that can give the impression that a person is heavy even when their body is thin. This effect will go away shortly after the person stops taking the medication but until then it’s best to not mention someone’s weight at all.
5. Is it OK for you to eat that?
Woah! You’re a doctor?! Oh no, you’re not? Well then, I definetly know more about what I can and cannot eat than you do so please don’t treat me like a child. The fact is, there’s no one-size-fits-all diet for people with an inflammatory bowel disease. Where one person may really struggle with spicy foods another person may be perfectly fine. Crohn’s and colitis patients know what they can eat, and when someone’s looking over your shoulder and commenting, it’s rude and weird.
6. You need to change your diet
Oh man, here comes the doctor again! While trying to help someone is a natural reaction when you hear they are in pain, please understand that people with an IBD and their doctors have considered a wide array of medications and dietary modifications. That being said, although the food a person eats can affect their symptoms during a flare-up, there’s no evidence that diet causes inflammatory bowel diseases or brings on flare-ups. It is important, however, for people with colitis and Crohn’s to eat as healthy and balanced a diet as possible, which again, they most likely know already.
7. Come on, try a bite! (Live a little or something like that)
My opposition to try your burrito is not because I’m unadventurous, it’s not even because I don’t want to, it’s because it will / has the potential to cause me pain. As stated above, people with ulcerative colitis and Crohn’s disease are very familiar with what foods they should avoid by necessity. If I’ve agreed to go out to eat with you, there is a good chance I’ve done my research on the menu please don’t try to force me into eating something that is not in my best interest.
8. Can’t you hold it in a little longer?
Trust me, I do not want to sound childish, and I know this is hard to understand but the answer is no. Performing daily tasks where I’m not sure of the bathroom layout is somewhat stressful let alone being on an open highway or worse, stuck in traffic. If someone with Chron’s or Ulcerative Colitis tells you they need to go, take this seriously and make it a priority to find a bathroom.
9. Why are you so tired?
This goes back to, the “you look fine” way of thinking. Sometimes people without a chronic disease don’t understand that you don’t need to be bleeding out of your ears to be in a constant state of discomfort or pain. Ulcerative colitis and Chron’s is constant battle which often results in frequent and substantial loss of blood. Please understand, I would love to be energetic and participate in whatever it is that is going on, but sometimes I just need to rest.