This holiday season, as you prepare and eagerly await your gatherings and feasts, please remember the gastroparesis community. Far from being a festive season, this can be one of the most challenging times of year for us. The physical and social aspects of dealing with this cruel disease make many wish we could hide from the holidays rather than incite us to join in the celebration. And though we are glad our families and friends can savor the wonderful treats associated with the holidays, we long for a gala where food takes a backstage and sharing each other’s company becomes the star of the event.
Thanksgiving is particularly difficult as it is a holiday that largely centers around the feast itself. Many in our community cannot eat at all and most are very limited in what they can consume. Can you imagine observing all the food that appears on television, on billboards, in social media feeds, and in various public arenas at Thanksgiving time and not being able to consume even a few bites of it? Can you envision watching everyone else seated at the table, enjoying beautifully crafted homemade meals lush with every food you dream about every single day while you sit to the side, unable to taste it? It is painful – physically and emotionally. We long to join in your events, but the temptation to eat that which we cannot is sometimes overpowering. At times, even the smells of the foods at such events keep us away. Since nausea is a major concern, the aromas filling your houses are often intolerable to us. And we worry that we will not have unfettered access to your restrooms should they be required. Not a pleasant topic perhaps, but these are the joys of our physical symptoms.
Many of us are unable to participate in holiday events and family get-togethers due to the ever-present physical symptoms of our illness and the sheer fatigue that accompanies it. We are, quite simply, too sick and tired to make it to the party. Because we are worn down from battling pain and nausea, and because most of us do not consume nearly enough calories to meet our nutritional needs, we often do not have the energy required to dress up, ready ourselves, make the trip, and spend long hours socializing at a holiday event. We cannot afford to waste precious energy needed for our survival on these lovely but unessential “extras.”
Emotionally and mentally, this brutal disease takes a toll on us at this time of year. We long to be included, but we do not know how to make you see that we cannot celebrate in the same fashion as most of you. Some of us find ways to cope, perhaps by bringing our own food (or other source of nutrition) to your event, by coming late and/or leaving early, by distracting ourselves with alternate activities while the rest of the party-goers dine, or with the help of another such creative diversion; however, some of us cannot bear the effort and sacrifice this requires and choose not to attend.
Please try to understand that when we pass up invitations or do not "like" your posts regarding foods and holiday parties, we are not being unkind, and we do not wish to avoid you. We only want to escape the things that make dealing with our condition more difficult. Believe it or not, we do not like to see our family and friends uncomfortable. We are well-aware that we can be an inconvenience and a source of guilt for those who cannot help us and who feel bad for partaking in the dinner while we watch from afar. We do not wish to see our loved ones enjoy the festivities any less because of our presence.
What we would like, and what you can offer is, first and foremost, sensitivity to our plight. We miss our old lives and long for things to be the way they were prior to diagnosis. We struggle greatly to accept that our lives will never return to the “way things used to be,” and we sometimes get lost in those sad moments. We are capable of happiness at this time of year, but we might forget that for a brief instant, and it sometimes takes great effort on our part to remind ourselves that we can still have joy in our new post-diagnosis lives. We fight to find substitute sources of delight and focus on what truly matters.
In addition, you can help us by offering alternatives and minor accommodations. Perhaps friends and families might be willing to oblige us by allowing us to bring our own foods/nutritional supplements without feeling insulted when we “refuse” to taste your culinary creations. Or perhaps you might permit us to come at an earlier/later time or stay only a few minutes so that we miss the dinner portion of the event and do not exhaust our limited energy resources. We do not wish to insult you, and we value your company, but “just a few bites” of an unsafe dish or “just a few more minutes” at the party can leave us in agony for days after the event. We are sure you would not wish this for us. And if you are feeling especially sensitive and accommodating, perhaps you might consider holding a completely separate holiday affair which does not include food in any form – a second event just for us. Or maybe you would like to leave the hustle and bustle of the holiday party world for a brief spell and have a quiet visit with us in the comfort of our own homes. We know this can be an inconvenience, but we miss you and would love to see you when we are feeling up to it.
We do not expect (nor want) you to give up the traditions and events that you have always enjoyed at this time of year. We ask only that you understand that we often mourn days past and long to have those times back again. We hope you will consider finding ways of including us (and our post-diagnosis bodies) in the holidays. After all, it isn’t really about the food. Isn’t it truly family, friends, and good times spent enjoying each other’s company that make the holidays special?