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, social, emotional, and financial hardships associated with these life-altering diseases and disorders make many of us 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 and join in the various festivities, we long for understanding, and we yearn to be included in some fashion.
We want you to know that there are numerous obstacles surrounding the holidays for those of us with digestive disorders. To begin with, many of us are unable to participate in the usual holiday events and family get-togethers due to the ever-present physical symptoms of our illnesses and the sheer fatigue that accompanies them. 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 prepare food, purchase and wrap gifts, dress up, ready ourselves, make the trip, and spend long hours socializing at a holiday event. We cannot afford to use precious energy needed for our survival on these lovely but unessential “extras.”
Travel is likewise difficult because of our fatigue but also because many of us must carry along cumbersome equipment and supplies required to treat our conditions. We worry that we will forget a necessary item or bring fewer supplies than needed, and we sometimes fear that our symptoms might worsen to the point where we might need immediate access to our medical providers. We wonder if local hospitals and medical providers will be able to quickly assess our health needs and assist us in an appropriate manner should supplementary care be required.
In addition, many of us are disabled, unemployed, and/or have high medical expenses and find ourselves financially strapped at this time of the year. We would love to purchase goods and presents and make long trips to see loved ones, but we find ourselves struggling to pay for our basic medical expenses and cannot afford to spend extra on things above and beyond the essentials for our survival. We hear your kind offers that we are not obliged to pitch in for the meal or reciprocate gifts, but for many of us, this creates a sense of guilt and makes us feel as if we have not done our part or contributed in a meaningful manner.
Please be aware that, emotionally and mentally, these pitiless diseases take a heavy toll on us at this time of year. Many of us become depressed because we can no longer participate in the holidays in the same manner we did prior to diagnosis. We find it difficult to cope with the abandonment of old traditions. We are, in short, not quite our usual cheerful selves. These feelings may intensify if we are unable to attend the usual celebrations, and our feelings of isolation, the sense of being “ignored,” can become crippling. Rather than reveling, we often find ourselves mourning the loss of our old lives.
Though the entire holiday season can be quite stressful for us, Thanksgiving is particularly problematic, as it is a holiday that largely centers around the feast itself, and deserves special mention. Some in our community cannot eat at all and many are severely limited as to what they can consume. We are flooded with images of sumptuous food that appear on television, on billboards, in social media feeds, and in various public arenas at Thanksgiving time, and yet we are unable to consume even a few bites of these delicacies. Can you imagine the anguish of watching everyone around you enjoying beautifully crafted homemade meals, lush with every food you dream about every single day, while you sit to the side, unable to taste these treats? It is painful – physically and emotionally. We long to join in the normal events, but the temptation to eat that which we cannot is sometimes agonizing and overpowering. At times, the mere 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 – though not a pleasant topic – we are concerned that we will not have unfettered access to your restrooms should they be required. We are further horrified at the thought of creating an awkward and embarrassing situation for both ourselves and our hosts. Such are the joys of our physical symptoms.
We desperately seek to take part in the holiday happenings, but we do not know how to make our loved ones see that we cannot celebrate in the same fashion that we used to or that most of you still do. Some of us find ways to cope, perhaps by bringing our own food (or other source of nutrition) to your event, by limiting our time – 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 tactic; 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 social media posts regarding foods and holiday parties, we are not being unkind, and we do not wish to avoid you. We still yearn for companionship and inclusion. We only want to escape the circumstances that make dealing with our conditions 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 do not know how to help us and who feel bad for partaking in the dinner and festivities while we watch from afar. We do not wish to see our loved ones enjoy the merriments any less because of our presence.
What we would like, and what our families and friends 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 to your sensitivity, you can support us by offering alternatives and minor accommodations. Perhaps you might be willing to oblige us by allowing us to bring our own foods/nutritional supplements without feeling insulted when we “refuse” to taste the culinary creations that it took you “all day” to produce. 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 would likely appreciate the chance to rest in a secluded spot without the noise and commotion normally found at holiday gatherings when necessary as well. We do not wish to insult you. We know you have gone to great trouble, 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 compassionate and accommodating, perhaps you might consider holding a completely separate holiday affair, possibly less boisterous, 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. It is an especially difficult time of year for us. We hope you will consider finding ways of including us (and our post-diagnosis bodies) in the holidays. After all, it is not really about the food. It is truly family, friends, and good times spent enjoying each other’s company that make the holidays special. We welcome and cherish those moments.
*Please Note: A shorter, slightly altered version of this blog was published on "The Mighty" at https://themighty.com/2016/10/difficulties-of-the-holiday-season-for-people-with-gastroparesis/. This blog will also be available in the Association of Gastrointestinal Motility Disorders (AGMD) quarterly newsletter. You can find additional information about the AGMD at http://www.agmd-gimotility.org/.*