When People Don’t Understand ‘The Whole Crohn’s Thing’

When People Don’t Understand ‘The Whole Crohn’s Thing’

crohn's corner

So, last week I shared with a group of women — some of whom I know very well, others I don’t know at all — the whole Crohn’s thing. (I don’t know what else to call it.)  Most were supportive, either by asking appropriate questions or wishing me well and hoping that I would get better with my new treatment. They said they had learned something from what I had shared.

But one woman really made me angry. I didn’t know her at all. She informed me that her husband had Crohn’s disease and had it for their entire married life of 30+ years. First, she informed me, Crohn’s could not possibly be genetic because neither his parents nor any of their children had the disease. I tried to explain to her that just because none of them had the disease did not mean there wasn’t some degree of genetic inheritance to it.  In fact, in my opinion, most conditions have a genetic component. Neither of my parents has Crohn’s, nor do my children or my siblings, nor my niece and nephew, but my mother’s sister does. And most people I know with the disease can trace it to another relative who has the illness, or to another inflammatory bowel disease, Colitis.

But that wasn’t what bothered me most about this woman. What bothered me most was when she said that people with Crohn’s disease tend to be more sensitive than other people, and that they tend to hold things inside and that is the reason why they have Crohn’s disease. Well, that set me off. One of my pet peeves is that I can’t stand people who think that emotional distress or emotional unhealthiness is a reason for Crohn’s disease. I can’t control my Crohn’s any more than a Type 1 diabetic can control his or her diabetes, or someone can control developing cancer, or someone born missing a limb can “think” until the limb appears. Those examples sound ridiculous, right? Yet, because I have a disease that attacks my digestive system, somehow I can control it.

I informed this woman as nicely as I could — but admittedly through gritted teeth — that Crohn’s is an autoimmune disease that happens to wreak havoc on the digestive system and that it is not something anyone can control. She didn’t reply.

I also should note that Crohn’s attacks are a very specific feeling, at least for me. The exhaustion is different than, say, exhaustion one might feel after a busy day. The stomach discomfort is not the same as you would get if you had a stomach bug. It’s certainly different than the discomfort you might feel if you were stressed out about something.

I want people to understand this. I want them to understand that I know my body. I want them to understand that I’m doing everything in my power to be healthy. And I mostly want them to understand how to respect me and my illness.

Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.


  1. Shmuel says:

    I have had crohns since I was 21 years old, that is for ten years now.

    While that lady was insensitive, and you may be unable to control crohns with stress alone, in my opinion there is definitely an emotional component to all disease, including crohns.

    Learning to tune into spiritual and emotional wellbeing can be a key ingredient in living a healthy lifestyle. Autoimmune disorders are not freak accidents like being hit by accidents car. There are many components that can affect the overall well-being such accidents diet, sleep, exercise, stress and environment. These factors can have a powerful effect on most diseases’ development and treatment.

    Wishing you good health,


  2. Lois Lightman says:

    I am 82 yrs old. I have had Crohns Disease since I was in my twenties. I have had 4 surgeries. The disease is back. I have high blood pressure – heart disease – COPD – & asthma. I am too high a risk for surgery. I am now suffering.

  3. kay says:

    i have had crohns for 30 years, many operations and permanent ileostomy.
    As stated above Crohn’s is an autoimmune disease it is NOT caused by stress , Stress doesn’t help but it sure isnt the cause.

  4. Andrea says:

    I have ulcerative colitis, I have had my entire colon removed. I have had many issues with people in my life not understanding. I do think that we (people with IBD) are more sensitive, but not because we are weak, but because we are in tune with our bodies. I have been lucky enough to find some great doctors, after being misdiagnosed for 5 years. I am sure I would have had the same response as you at first. But, over the 15 years that I have dealt with this, my father has bought me countless self help books, in his attempt to help me. There is a very interesting one called “When the Body Says No”. It talks about the mind body connection, you may like it. It took me years to read the books from my father, because I was offended that he thought I needed them, much like you described this lady. It sounds like she didn’t mean to be hurtful, but that she thought that she understood because of her husband. But, as I am sure you fully know, they (healthy people) will never truly understand what people with IBD go through. I hope that you are doing well and if you ever want to talk feel free to send me a message

  5. Andy says:

    I was diagnosed with Crohn’s 30 yrs ago aged 23 and I was really ill and was in hospital for 5 weeks ,I’ve had numerous hospital stays over the years but fortunately I’ve had long periods of remission in-between so I count myself lucky,but on 27th December 2010 my world was turned upside down when I lost my 16 yr old daughter in a car accident also also her boyfriend and another friend died and as you can imagine the emotional stress I went through then was more than most, but no flare up Crohn’s I was symptom free for 6 years up to last year when I had another flare up and had a bowel resection , so no one will ever convince me that Crohn’s is triggered by emotional stress . The only person in my family who has Crohn’s is a cousin of my mother,strange.

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