To be honest, I didn’t quite know how to answer the blog prompt for today. Our official assignment was to write about our favorite dish, explain how to make our favorite recipe, and describe why it brings us joy. Well, by now, you likely all know that this would be a difficult task for those of us living with gastroparesis. I considered sharing a recipe that I particularly enjoyed prior to my diagnosis, but I worried that it would be a little too upsetting to both me and those in my GP groups who might take the time to read this blog. I thought about presenting a GP-friendly recipe, but I am afraid I really don’t know of any tolerated well by our entire community. And so, in the end, I elected to alter the original assignment and re-title my personal challenge for today, “When Food is Not Comforting.”
Those of us living with gastroparesis do not often associate the word “comfort” with food; rather, eating is frequently torturous for us, and food is more of a poison than a comfort. But food is much more than this in the GP community. It is a significant, if indirect, cause of much isolation, loneliness, and depression for many of us. I have spoken numerous times before of the agony of being constantly bombarded with food – in advertising, at social events, and, of course, in my own house – and yet being unable to consume it. I think about food every minute of every day. I long to taste the dishes I enjoyed before my diagnosis. I mourn the loss of being able to join in the feasts at social gatherings. It is unimaginably difficult.
Many in my community avoid social gatherings all together for this reason. They cannot bear being in the midst of a celebration of food which they cannot have. The mere aroma of the food is too tempting for some and outright nauseating for others. Social events can be uncomfortable for both the “eaters” and the “non-eaters.” I suspect the hosts and eating attendees feel both sorry for us and a bit guilty for consuming food in front of us. Those who can eat frequently try to persuade those of us who cannot eat to try "just a few bites.” They are “sure” we can ingest "something." After all, they “spent all day preparing it.” Can’t we just try a bit? How bad could it be? No doubt they believe we could eat just a little. It seems so reasonable to those who have not experienced the pain ensuing from those few bites. In any case, the pressure to participate is unbearable for us non-eaters. We either feel as if we have somehow failed because we could not eat, or we give into the pressure to consume food and pay the cost in pain for days afterward. Because of this, many of us face severe anxiety at the thought of attending social events.
The ensuing “shying-away” from food and food-centered gatherings leads to somewhat unexpected and even more devastating consequences for many in the GP community. We stop participating in food-related get-togethers and outings, and over time, people stop inviting us. No more family dinners; no more restaurant dates; no more Christmas Eve cookie exchanges; and no more banquets, picnics, quick work lunches, or Sunday breakfasts out with the family. Some family members and friends are sympathetic; others make no attempt to understand or accommodate. In either case, the result is the same: people move on with their lives. Our family and friends continue to pursue the same activities as always; they simply pursue them without us. This is to be expected, of course, and many of us encourage our family members and friends to refrain from altering or skipping the activities they so enjoy – but that does not make the resulting isolation and solitude any less difficult to face.
There are ways to deal with these issues, of course. We can bring our own food or nutritional supplements to social events, request alternate gatherings without food, choose to attend for a short time and exit when the food arrives, or find ways to busy and distract ourselves away from the food at these celebrations. There are adjustments that can be made, but they are not easy or pleasant. It is indeed difficult for some to see a way out of their state of affairs. The loneliness and isolation, the feeling that they have been deserted by those closest to them, and the anxiety over attending events lead to depression for many. These poor souls have great difficulty facing their situation, and they find it nearly impossible to change their circumstances. (Those of us in the support groups do what we can to help others cope with these feelings, but the problem is widespread, and it is not easy to solve.)
So, far from being a source of comfort and warm feelings, food is the bane of our existence for many in the gastroparesis community. In a world which revolves around holiday feasts and food-centered parties, there is little room for those of us who cannot eat. It is a difficult cross to bear.