If you have Crohn’s Disease you have probably not escaped the court of public opinion unscathed. It seems like everyone has their own opinion of your disease. After talking with numerous people with Crohn’s, I noticed that there are a few comments or questions that frequently popped up. Here are a few things people with Crohn’s are tired of hearing and why they are tired of hearing it.
I don’t know what the motivation is behind this comment, but it may be intended as a compliment. However, telling someone they don’t look sick can often be taken as diminishing their illness. Many people with invisible illnesses do not get the same kind of compassionate care because they do look well most days.
_Have you tried “x, y, z” natural remedy? _
So, your aunt’s cousin’s friend’s dad used this crazy natural remedy and cured all of his digestive issues. That’s wonderful, but most people would rather get medical advice from their own physicians. Their doctors know the entirety of their illness, the newest research, and what things can help or hurt in the fight against this disease. If there were really a cure for Crohn’s, it would most likely be in use by the mainstream population.
_I know how you feel, I’ve had (a stomach bug, IBS etc). _
Chances are, unless you have lived in that person’s exact circumstances, you really don’t have any idea what they are feeling. Stomach bugs and Irritable Bowl Syndrome are not pleasant, but comparing them to Crohn’s disease is like comparing a splinter to a stab wound. They are nothing alike.
_Have you gained weight? _
Weight comments are a sensitive subject for most people. Commenting about weight gain can be an even more sensitive topic. Unfortunately some of the treatments for Crohn’s include steroids like prednisone. Prednisone can cause swelling, and a ‘moon shaped’ face is the hallmark side effect of the medication. Discontinuing the medication is usually not an option for a Crohn’s patient, so comments do nothing except upset the person. Trust me, those on prednisone know the side effects better than you do.
_You’re so lucky you can eat whatever you want and stay so skinny. _
Lucky? Being in severe pain, needing a restroom frequently, hospital stays and surgeries aren’t the way anyone with Crohn’s would choose to live. Even if it meant “staying skinny.” As a general rule, weight comments of any kind should be avoided.
_You should change your diet. _
Most people with Crohn’s have a nutritionist that works with them to insure that they have adequate intake and to prevent or treat deficiencies. Fad diets that remove entire food groups are the last thing someone with Crohn’s needs to try. They only exacerbate the potential for deficiencies. A healthy, well-rounded diet as tolerated is best for those with Crohn’s. There is no ‘one size fits all’ diet for Crohn’s disease. What one person can tolerate may not work for the next. Eating certian foods do not cause or cure Crohn’s. Leave the diet tips for the dietitian.
_You would feel better if you got rid of the stress in your life. _
We would all feel better with less stress in our lives, but stress does not cause Crohn’s disease. These kind of comments make a person with Crohn’s feel like they are being blamed for their illness. Managing stress can be important in dealing with the ups and downs of a chronic illness but it won’t make the illness disappear.
_Can’t you wait a minute to use the restroom? _
Let’s just be blunt. If someone with Crohn’s tells you that they need to use the restroom - they mean right now. There is no waiting when you have a gastrointestinal illness. No one wants to deal with not making it to the bathroom in time! So, be sensitive and help your Crohn’s friend find a bathroom quickly and don’t call them out on frequent stops.
_Why are you always so tired? _
Most people only see Crohn’s as a gastrointestinal illness. While GI symptoms do make up the largest area of the illness, Crohn’s disease can also cause a whole host of other symptoms. The medications used to treat the illness, surgeries and malnutrition can also cause extreme fatigue. Instead of asking a Crohn’s patient why they are always so tired, try offering to help take something off their “to do” list so they can have more time to rest.
_Maybe it’s all of the medications you are on that are making it worse. _
One of the most hurtful comments I have heard in dealing with my daughter’s illness was that “the only thing wrong with her is that she is being over-medicated.” My daughter doesn’t have Crohn’s, but no matter what your illness, having someone tell you that your medications are the cause of your disease is frustrating and insulting.
Most Crohn’s patients have done a lot of research on their medications and certainly aren’t blindly taking medicines. While some of the medications for Crohn’s can have side effects, the benefit- more often than not- outweighs the risks. Often the medications are the only thing preventing a flare up or long-term side effects.
If you have Crohn’s and someone in your life is making these kind of comments - share this post with them. Sometimes a little education on the subject (from someone else) can help reiterate your concerns with the unwarranted opinions. Have you heard any comments not listed here? Share them in the comment section below.
_Jennifer has a bachelor’s degree in dietetics as well as graduate work in public health and nutrition. She has worked with families dealing with digestive disease, asthma and food allergies for the past 12 years. Jennifer also serves the Board of Directors for Pediatric Adolescent Gastroesophageal Reflux Association (PAGER). _