- Meet Consumers/Patients
From Halloween through Valentine’s Day, fall and winter are loaded with holidays—and many seem heavily focused on food. We invited Oley members to share what they consider most stressful about holidays, and how they manage, reduce, or avoid the stress. Here are some of the responses we received. Note: HPN = home parenteral (or IV) nutrition; HEN = home enteral (or tube) nutrition.
The holidays seem to revolve around food, and for many of us that is a real challenge. I’m okay with friends and family, because they all know about my eating difficulties. But strangers or acquaintances with whom I am not as familiar often urge me to eat, to "taste this,” or question why I am sitting with just mashed potatoes on my plate.
I have developed a short, quick answer that usually puts a stop to the questioning and prodding. I say, "I have a digestive problem that severely restricts what and how much I can eat. But tell me, what are you doing these days?” Most people are more than happy to turn the conversation to themselves, and they get the general idea.
Really, these get-togethers are about the conversation and the chance to see people we rarely see, and as long as they’re not bugging me to eat, I enjoy being in the company of others. I try to keep the conversation away from my illness, hospitalizations, and surgeries. When queried, I always respond that I am doing fine. It’s too complicated to try to explain in any kind of detail.
—Candace, Forum Contributor "candacepoet”
I have found it is best to be matter of fact. I have a feeding tube because my digestive tract does not operate in a way that allows me to get the nutrition I need from food. Like Candace said [above], a very good tactic is to turn the conversation back to them.
As far as details go, I generally tell others it is a long boring story that probably isn’t appropriate for the dinner table, but if they really want to know more about my condition(s) maybe we could get together another time. In my experience this pleases them because you are not actually blowing them off, and no one has ever followed through with it. People will only make as big a deal out of it as you do.
—Kristin, Forum Contributor "Scooby06”
Socials are always centered around food, and the holidays multiply these socials. Since I enjoy gatherings with friends, I am glad to attend and I try to eat only what agrees with me. At a recent Labor Day BBQ, I asked what was in the salad and if there was cheese in the casserole. When I heard cheese was in both, I just said, "No, thank you,” as I passed through the buffet line. There were other things I could safely eat. I also took along my oral rehydration solution to stay hydrated. For dessert, I had one spoonful of ice cream to satisfy my sweet tooth. This much I am able to get away with safely, and a taste satisfies me. I also try to carry my Lactaid to take when ingredients are unknown, especially at restaurants.
When eating at friends’ homes, I remind them I like Smart Balance instead of butter, and am willing to show up with it and some Lactaid milk. At hotels, most continental breakfasts have only butter and milk, so I pack my Lactaid and Smart Balance with my HPN.
Holidays are a time for friends and family. Enjoy the gatherings and abstain from the food that disagrees with you.
—Barbara Klingler, Oley Ambassador
I think as we get older, we learn to listen to what our bodies are saying, and we realize that holidays don’t have to be perfect in every way. Instead of making twenty different kinds of goodies, we decided to make four. A Christmas tree in every room wasn’t really necessary. We’ve realized our friends and families really, truly would rather have us than all that glitter!
Be kind to your body and give yourself permission to be lazy on days when your body tells you.
P.S. As a family, we celebrate Christmas because of the miracle of the birth of Jesus. Each of us is here today because of our own type of miracle, and our children who were born with GI problems are miracles, too. Celebrate being alive every one of the 365 days of the year.
Managing short bowel syndrome is always a challenge. During the season of holidays each fall/winter, managing a restricted diet, fatigue, extra stress, and higher expectations is a prolonged extra challenge. I find that I frequently fall prey to all the activity and end by spending the rest of the winter recovering. For me, the holidays are both a wonderful time of expectation and a recipe for disappointment. Each year I try to look forward to this time and plan accordingly, reminding myself that these weeks are difficult for almost everyone, even those without nutrition, diarrhea, and fatigue issues.
Acknowledging the challenge is the first step for me. I’ve been doing this for a long time and have plenty of bad experiences to learn from, but I still find it very difficult—while remaining hopeful that this year I will get it right!
Some of the accommodations I have made around preparing and planning for the holidays are to:
As we approach another season of holidays, I’m again trying to get it right. I have two large family gatherings at my house and this year they will be potluck. I did it all last year and spent four days in the hospital recovering afterwards. The question is only whether I learned enough. So Happy Holidays to each of you, and wish me luck!
—Mary Patnode, former Oley Ambassador and former President, Oley Board of Trustees
Another important thing I try to remember is that my friends or relatives may be uneducated about home IV or tube feeding, but they’re not unfeeling. I try not to take personally what other people might say because they don’t know what my life is like—living in a food-free world.
Try to make the best of an uncomfortable situation. Focus on what makes you happy; find the strengths within you that make you comfortable. It is not necessary to miss out on social events, though it takes time getting used to it. You could make your appearance after everyone has eaten so it makes it less stressful for you. Reorient your mindset and remember why you’re there. Focus on the people around you and the celebration of being with friends and family, and not on the fact that you can’t eat.
Do what is best for you and not other people (your feelings have to come first sometimes, to help you cope with what’s ahead). Be happy with the people you’re with and let this ease your tension. Chances are, the people around you are also feeling the effects of the holidays—stress and depression—though for different reasons. Take a deep breath and enjoy the moment as best you can.
—Carol Pelissier, Oley Ambassador
When it comes to meals and meeting family and friends over coffee, I focus on the conversation, company, storytelling, sharing, and love. I avoid or refuse to join people in any venue that is loud or uncomfortable as I know this will sap energy and cause physical discomfort bordering on pain. It is much more about the people I’m with and what we are doing than the food I cannot eat.
—Ed Steger, President, National Foundation of Swallowing Disorders
2/6/2017 » 2/10/2017
Feeding Tube Awareness Week
2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week