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The Emotions of Not Being Able to Eat in a World That Revolves Around Food

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“Hi, waiter? Yes I’d like to order please. I’ll have the tube feeds for dinner. Oh wait, no, I’ll have the parenteral nutrition. Thanks so much.”

If you have no issues with food, you probably haven’t thought about how food-centric the world we live in is. You can’t watch the TV without an advert for a supermarket or restaurant. You can’t walk down the high street without sights and smells of mouthwatering (and sometimes nauseating) foods. And socialization? When was the last time you went out to do something that didn’t involve food or drink?

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Food and drinks are everywhere, and for good reason. I’ve learned it’s fairly important (!) to get decent nutrition, as I’ve resorted to tubes and central lines to do so.

So living in this world when a sip of water can leave you severely unwell presents an issue as a result of gastro-intestinal failure due to Ehlers-Danlos syndrome. My attitude towards being around food changes every day, so I’ll briefly explain some of the emotions I feel.

“I just want to be included.” Without a doubt, the thing I miss most about eating and drinking is going out with friends or family. Meals are celebrations for all kinds of events and an ideal time to catch up. Of course, I can and do still attend restaurants and cafes, but sadly telling a waiter that “I’m really sure I don’t want anything, thanks” gets tiring.

“Please stop making a big deal about this.” There’s a look you’ll only understand and receive if you’ve been unable to eat. It’s a cross between puppy dog eyes and almost bursting into tears just as they’re about to take the first bites of their meals, and it’s the most frustrating look in the world. I know it’s sad I can’t enjoy the food you are, but you can and I want you to savor it. I want you to realize how lucky you are, and enjoy every bit. I don’t want your sympathy, I want to see your happiness.

“Food is my mortal enemy.” There are times when the thought and smell of food bring on debilitating nausea and sickness. Blagh.

“My God, I need 20 chicken nuggets and a pint of Ben & Jerry’s right now.” Food is comforting after a bad day sometimes, but obviously not to my digestive system.

“I actually couldn’t care less about not eating anymore.” There’s so much more to life than food and drinks. I would rather be with my friends who are eating than alone at home. I’d rather keep living as well as I can than getting upset about losing the ability to eat and drink. I’m only human and wish I could feel like this every day, but there are definitely days that I do.

“You don’t know what you have until it’s gone.” Food’s great. Functional digestive systems are great. Nutrition and sustaining yourself is the greatest gift. If you have it, embrace it.

Like I said, I feel differently about food and being tube-fed every day. So please don’t assume I don’t want to be around food and not invite me to meals and gatherings. Please leave that decision with me.

Follow this journey on That Professional Napper.

Thinkstock photo by duha127

Originally published: February 24, 2017
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