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Unsolicited Advice About Crohn’s Disease is the Worst

Nobody likes unsolicited advice, and when it comes to this kind of feedback about Crohn’s disease, it can take everything you’ve got to keep your composure.

This disease is hard enough to live with given that the cause is unknown and so is the cure. It only makes matters worse that the public, by and large, does not understand how Crohn’s can affect someone—and yet, many don’t hesitate to share their ‘helpful’ opinions.

We wanted to give the Crohn’s community a chance to answer back, opening up about the worst unhelpful feedback you’ve had to deal with. To start a conversation, we reached out on the CrohnsDisease Facebook page, asking you to answer: “What has been the WORST unsolicited advice you’ve received about your Crohn’s disease?”

Nearly 60 of you responded to the topic. Here’s what you said.

A person does not cause their Crohn's disease

“That I myself caused it.”

There is a bit lack of understanding and empathy when it comes to Crohn’s disease— which in part makes sense because the cause is unknown. But, that doesn’t mean that the patient is to blame. We are sad to hear that so, so many of you are being told that you are at fault for having Crohn’s. We know that you did not cause your Crohn’s. Not at all. It’s a shame, to say the least, that so many of you are finding that speaking up to friends and coworkers results only in blame. We are sorry you are having these experiences, and we hope that you are finding people who understand—both online and in your physical communities.

“It’s all in my head. If so, then why is the pain in my gut!”

“That I myself caused it.”

“You’re just looking for attention. If you wanted to, you’ll stop throwing up.”

“I bring on myself.”

Others think that diet causes Crohn's disease

“That eating more vegetables will make it go away.”

So often, doctors struggle to help patients find relief, and yet bystanders think the solution is your diet. So many of you are sharing that people are telling you what to eat—from more vegetables to smoothies—as if that were the solution. Sadly, there is no magic diet cure, which most of you know, but the public does not.

“If I go on the Keto diet, it will work. There’s no diet out there that is the cure. Otherwise, I and everyone else would be better.”

“That eating more vegetables will make it go away.”

“Eat more fiber and it should go away.”

“You need to drink smoothies.”

The struggle of working with Crohn's

“You can’t call in sick.”

What’s perhaps hardest to accept is how little the professional world understands about Crohn’s. More than a few of you shared that your workplace is telling you that you can’t call out sick. Sadly, talking about anything that relates to the bowel is uncomfortable for most people, and HR people can often be no different. If you’re up for it, educating people in the HR field could be helpful as you will likely not be the company’s only or last employee facing these issues.

“It’s just a bathroom thing—as in you can't call in sick for this since it’s not intestine related.”

“Maybe if you take a long-term leave it will get better. I couldn’t believe it! My HR director said this.”

Doctors aren't always helpful

“That going to the doctor will help.”

Crohn’s is easily one of the most misunderstood diseases—in large part because it’s also one that is perhaps the least talked about. Because of that, people you encounter may be trying to connect you with a quick fix—or any fix—in part because they don’t know what to say or how to handle this news. While some of you have had success with going to the doctor, many of you have not, which makes this unsolicited advice especially hard to hear, which we completely understand.

“That going to the doctor will help. It never does. I was sick and in a coma in February. I had deathly low potassium, septicemia and impacted kidney stones. I went again to the doctor on Friday. The team didn’t even do blood work. I’m just going to live the best life I can while I’m here.”

“When I asked to be put on Entyvio or Stelara, my former doctor laughed and said ‘It’s not time for that yet.’”

We want to say thank you to everyone who shared so candidly about this topic. We appreciate your support of the community.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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