Why I Hate Unsolicited Food Advice
Food – the topic that patients living with inflammatory bowel disease hate the most. Seems like everyone and their mama has an opinion about food.
"You should be eating this, or following this diet!"
"You should not be eating that!"
Comments about food and nutrition to someone with Crohn's or UC
Statements like this only confuse new patients and greatly annoy seasoned ones. New patients are already overwhelmed with being hit with an incurable illness. Crohn’s disease and ulcerative colitis are no walk in the park. Diagnosis of either disease rocks a person to his or her very core. It changes your life forever. On top of having to juggle taking a medication for the rest of their lives, patients are also forced to deal with new doctors, medical lingo, and symptoms that sometimes change from one day to the next. They don't need the added stress of someone trying to advise them one what to eat. First of all, you can’t put IBD in a box. It's different for everyone and you can’t predict anything about it. Veteran patients know this all too well.
Foods that do or don't work for people with IBD
Ask someone who’s had the disease for 3 years or more and they more fully understand what it’s like to actually navigate the disease. They learn what foods work for them and what foods don’t. While very confusing, they know that a food that is considered safe for them may not be the case for their friend who shares their exact diagnosis. It really makes no sense. I personally have a friend who cannot eat meat, but does just fine with vegetables. I, on the other hand, when in the throes of a raging flare, cannot have vegetables unless I want to die a slow, painful and bloody death.
It's disappointing when different diets don't work
I don’t understand it, and neither do doctors. It’s true that there are diets out there that help ease the symptoms of some patients. But those diets aren’t going to help all patients. I’ve tried many of them myself and was vastly disappointed when they didn't work for me. While I understand that diet doesn't help all patients, I would never discourage anyone from trying one. Because, honestly, how do you know unless you try? It’s like the medications out there to treat IBD: it's all trial and error.
It's impossible for others to truly understand this condition
When you live with Crohn's or UC, you really get to know your body. Sometimes even better than the doctors who treat the diseases. A person on the outside looking in can give you all the advice in the world, but unless they’re you, they will never know what you can handle. They will never understand what you’re going through or what works for you.
So why do people offer diet advice? I think most people mean well. I really do. But when patients hear these things over and again from more than one source, it can get old fast.
Don't worry about what others think
"No wonder you're sick! All you eat are donuts!" Um, actually, no. Food doesn’t cause it. Before diagnosis, there's a good chance that person ate a balanced diet. But after being hit with the disease, the diet had to change. At some point, when you're in the thick of it, you have to find something your body can handle or else die of starvation. At some point, living with IBD is all about survival. If you can’t handle certain foods, well, it’s not your fault. You do the best you can with what you have. Don't worry about what anyone else thinks. Because, again, you know your body better than they do.
How open are you about being diagnosed with IBD?