When Someone You Love Is Unable to Eat
As many of us with feeding tubes know, we live in a very food-centric society, a fact that becomes painfully obvious when all of a sudden you find yourself unable to eat like everyone else. Think about it — family dinners, lunch with friends, coffee dates, dinner dates, picnics, treats at the office for someone’s birthday, happy hour, movie popcorn, Halloween candy, wine tours, chocolate on Valentine’s Day, Thanksgiving dinner, meeting for drinks, juice cleanses, summer barbecues, going for ice cream, wedding toasts, cheers-ing. As a society, our social lives are built around food.
For those of us who are unable to eat, we don’t want to miss out on everything, but it can also be really awkward to be surrounded by food all the time. And for those of you who are able to eat, it can be awkward to know how to include us. There are many different reasons for someone to need a feeding tube or be on TPN (total parenteral nutrition), so it’s not a one-size-fits-all situation when it comes to having a friend or loved one who is unable to eat, but here are some basic guidelines I suggest for how to approach it.
For starters, whenever possible, try to hang out with us in a way that doesn’t revolve around food. Many of us with feeding tubes are dealing with chronic illnesses that leave us short on energy, so low-key activities are great places to start. Think movie afternoons, coloring parties and craft sessions. We also likely spend a lot of time going to appointments and running boring medical errands, but your company can make these tasks a little more exciting.
As for the rest of the time when food is a focus?
Respect our restrictions. Sometimes “just one bite” really can be a problem. If we say “no thanks” or turn down your offer, it’s not personal, it’s self-protective. Please don’t keep encouraging us to try something, because we might feel pressured to please you but then end up suffering consequences later.
Keep inviting us. Acknowledge that we might not want to join in, and try not to take it personally if that’s the case, but please keep giving us the option. Not being able to eat while everyone around us eats is hard, but missing out and not being invited at all is hard, too.
Shift the focus. When possible, create a situation where food isn’t the only focus. For example, if it’s warm enough outside, eat dinner on the deck so we can enjoy nature and have lots to look at rather than not knowing where to look while everyone else at the table is eating.
Let us take the lead. Don’t make it a requirement that we sit at the table while everyone is eating, and if we choose to leave the room, let us be. We may need to leave the room if the smells are strong or our symptoms are acting up, but we also may need to leave the room if we’re having a bad “I really miss food” week and we just can’t stand to watch you eat our favorite meal.
Enjoy your food. And don’t feel bad for doing so. In fact, we want you to enjoy what you’re eating because we would give anything to be able to eat it, too. There’s no need to apologize for enjoying your food… please don’t take a taste, look at us sympathetically and then say “I’m sorry, but this is so delicious!” All that does is draw attention to the fact that we’re not eating and remind us that we’re missing out. Feel free to exclaim over your food, but leave the apology out of it.
Resist the Q and A. Avoid questions such as, “Is this just torture for you?” or, “Oh man, I would just die if I couldn’t eat! How do you do it?” while you’re eating in front of us. One, it likely is slightly torturous. And two, if it’s not torturous, that’s because we’ve managed to focus on something other than food, and we don’t need you to keep reminding us of it.
Our illnesses are not enviable as weight loss strategies. Joking that you want our condition so you won’t eat so much or so you can lose weight is not funny, it’s insensitive. Usually when people say things like this they are trying to make us feel better, but it only minimizes our struggles.
Appreciate. Appreciate your food. Appreciate your body. Your body can take the food you eat, digest it and turn it into fuel, all without making you sick and miserable. Do you know how incredible that is?! Now and again, recognize how totally cool it is that your body does what it’s supposed to do.
Basically just carry on as usual and don’t draw attention to the fact that we’re not able to eat, because I can guarantee you, we are well aware of it already! Not being able to eat is not an unmentionable topic, though, and we might not mind you asking questions or acknowledging the challenges we face. In fact, it’s likely we’ll appreciate it. Just try and do so at a time and place when it won’t single us out as the only one not eating.
One last thing! Thanks for loving us. Thanks for reading this. Thanks for trying to understand us a little better. It means more than you know.
Be sure to look out for Feeding Tube Awareness Week next February!
The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.