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When Your Chronic Illness Doesn’t Allow You to Digest Food

I have severe gastroparesis and intestinal dysmotility, caused by Ehlers-Danlos syndrome (a genetic connective tissue inherited disease). Ever since 2010, I have not been able to digest food without throwing it up.

After exhausting all medications to help me digest food, I had an ileostomy surgery in hopes that my chronic severe constipation would allow my intestines and stomach to work better. The ileostomy relieved the incredibly painful intestinal and colon pain, but it didn’t help my stomach or intestines.

In 2019, I had a feeding tube inserted into my upper intestines and was told to not eat by mouth. This helped for a short time, but not without a different kind of stabbing intestinal pain. And it didn’t stop the constant vomiting of acid and bile or any tiny sips of water I drank to wet my dry mouth.

In 2021, my gastroenterologist had a central catheter placed in my chest and switched me from tube feeds to intravenous nutrition (TPN: total parenteral nutrition), and inserted a gastrostomy tube into my stomach for draining acid and bile and whatever liquids I drink. I am being nourished, but I still can’t eat food.

I miss being able to enjoy food. I grew up in a foodie household. My mom loves quality cooking. She bakes everything from scratch, and she cooks dinner every night from scratch. She can smell a brownie and know whether it was a box mix brownie (which she will not eat despite her love of chocolate), or a homemade brownie. She is the master of chocolate chip cookies and has baked a batch at least once a week for her entire life, starting at age 12 when she developed a love for baking. She packed gourmet lunches and snacks at school through my senior year in high school. I was fed quality, natural, organic, homemade, local delicious food all my life.

In my family, food is love. We have a summer house on a lake in New Hampshire where many of our closest friends live during the summer. It is one of eight camps, and together we prepare and enjoy extravagant meals throughout the season. We have gatherings with everyone and we all cook and bake amazing dishes to be shared. The owners of the houses stand up and toast the now-deceased gentleman who is the reason we all have this amazingly supportive community on the lake. Food is tradition, it is an expression of love, and it is a way we bond and socialize.

Ever since I lost the ability to eat, I’ve struggled with my relationship with food and these dinner celebrations. For years I simply did not go to these events. But I miss the social aspect that food creates. I still bake and cook and prepare the meals with my mom, because I can’t stand missing out on cooking and baking with her — it is one of my favorite hobbies. I miss sitting around the table and talking, laughing, and joking with friends and family.

I tried to go to dinners for years, but would often wind up in the neighbor’s house, puking in their bathroom. Then I tried attending the dinners and just not eating, but it was torture for me. I wanted to eat the delicious smells I was sensing. I felt so sad every time I watched someone spoon another delicious bite into their mouths and sigh with enjoyment. Then the dessert would come out, and I usually had made it, so I wanted to try it so badly. Most of the time, these dinners ended in me taking home leftovers and dessert, eating in private and puking all night.

The leftovers and dessert were not what I was craving though. I was craving the love, the connections, the togetherness, the camaraderie, the celebration, the satisfaction, the peace, the joy, and the jovial conversations. I miss the experiences that food often goes along with. It was too hard for me to sit at a table and watch others eat, so I stayed home and missed out on all of the socializing and connecting that food is associated with.

Not being able to eat food doesn’t just impact me on a nutritional level; it hurts my soul to not be able to be a part of the group. It is finally getting a little easier for me to sit with people who are eating, after years of not being able to join in, but it’s incredibly hard, and takes a lot of willpower to resist the tempting smells, and the delicious-tasting food.

I’ve been practicing sitting at the table while people eat by having lunch with my therapists and doctors, and other providers who work in the building where I receive psychiatric services for post-traumatic stress disorder (PTSD). Each day they have a home-cooked lunch prepared by one of their staff/providers. They all hold hands and bless the meal, and thank the cook(s). I’ve helped the cook in the kitchen twice in the last two months, and it has been so healing to be around food, cooking with intention, and being able to join them at the table while they eat, and be a member of the conversation. Both times I have sat with them at lunch it has been very hard on me mentally. I dissociated, I panicked, I froze, I served myself something little and poked at it – wishing I could eat it, but knowing full well that it would make me sick if I did. But I’m getting better at tolerating being at the table, and being around delicious food without becoming overcome by grief and frustration.

As this summer begins, and the meal gatherings and celebrations commence tonight for Memorial Day, I feel more prepared than ever. I know that it is the connection, love, conversation, and joyful energy I long for when we have gatherings. It is not just the food I miss out on. I plan to attend at least a short period of time at as many dinner celebrations as I can tolerate. I need to set myself up for success so that I don’t become overwhelmed and devastated, or fixated on when I can sneak leftovers to my room to eat in privacy, and then pay the price in the bathroom over the toilet bowl. I’m focusing on the people, the conversations, the present moment, and the energy that a gathering of loved ones creates. Since I can drain my stomach contents, I am able to drink clear liquids, so while everyone else is enjoying the food, I can enjoy as many cups of apple juice, ginger ale, seltzer water, and ice chips as I want. It’s not the same as eating food, but it’s as close as I can get.

I no longer want to hide from social gatherings in an attempt to avoid the temptation to eat food. This year I am stronger than ever and ready to tolerate the devastation of not being able to enjoy the food, because I will be filled with a deeper satisfaction that comes from being in the presence of those who I love.

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