One Bite at a Time: Navigating Sensory Issues and Healing from ARFID
Caroline stared at their plate. The meat was stringy. It might have one of those strings that made them gag and if they gagged, they knew they would be unable to eat the rest. The pasta would dissolve into a mushy ball at the back of their throat. They could feel the acid of the tomato sauce that would rise up their throat for hours after they choked down this meal.
Caroline lacked the words to describe the horror that lived on the plate and the fear that rang through their body. They mumbled the only statement that they could muster: “I can’t eat that.”
Sensory issues often go hand-in-hand with disordered eating. We do not know how someone else experiences food. Oftentimes, we do not have language to explain.
When friends asked if Caroline was a vegetarian, they started to answer “yes” to avoid the unpredictable texture and chewiness of meat. When Caroline’s roommate proudly said that she also abstained from carbs like pasta, Caroline just nodded. It was easier to agree than to explain. Some days, Caroline ate only carbs. Caroline often felt left out in conversations about food. Blaming it on a carb fear gave them a chance to connect.
Caroline had always been a picky eater but their whole family was, so it was less of an issue until they went to college. The school’s massive dining hall was a giant, noisy place that seemed to serve everything that Caroline hated. Caroline existed on a few staples, until their friends started to make fun of their weird food combinations. Caroline started to avoid eating with others. Even thinking about the cafeteria launched a giant knot in their stomach.
Eating connects us to others. Not eating the same things as others may get us labeled as “different” or “weird.” Noise sensitivities often co-occur with food sensitivities. The overstimulation of a loud restaurant (or college dining hall) may make eating even more challenging.
Without intending to do so, Caroline lost weight. People noticed. There were a lot of positive comments. Caroline liked how their body looked and felt.
ARFID (Avoidant Restrictive Food Intake Disorder) is often defined as limited food intake that presents without body image disturbance or fear of weight gain. However, it is hard to live in a fatphobic society obsessed with appearance and not have concerns about body image or a fear of weight gain!
Eventually, Caroline’s body rebelled out of the desperation for food. Food deprivation often triggers a binge response. Your body is trying to make sure you get the sustenance that you need to help keep you alive. To avoid social rejection, Caroline ate little during the day and found themselves binging at night, usually on safe foods. Sometimes, it was on anything they could get their hands on in a rapid, flurry of swallowing. Caroline’s weight climbed. People noticed.
The clinical definition of ARFID is defined as a disturbance in eating that results in persistent failure to meet nutritional needs, and extreme picky eating. It is often associated with a failure to maintain weight or appropriate growth, but food sensory issues don’t always result in a person being underweight. People in all sizes of bodies have ARFID. Food aversions and sensitivities may result in weight loss, weight gain, or no change in weight. It also may manifest differently throughout one’s lifetime.
It seemed like everyone had “nutrition advice” to alter Caroline’s body size. But Caroline could not imagine eating most of the “healthy” food recommendations. The foods were too mushy, too unpredictable, too slimy, etc. Caroline tried a few diets but always ended up binging again. They hated their body and their “lack of willpower.” Their eating became more isolated, more shameful, and more secretive.
YOU’RE NOT ALONE
If you resonate with parts of Caroline’s story, you’re not alone. There might be different textures that you despise (i.e. gummy, crunchy, squishy). The fear associated with food may originate from a variety of reasons (i.e. feeling ill, being gassy, choking, or public ridicule of your food). The worst part is, you might not have the words to explain your inconsistencies. Perhaps, one day, you eat the meal fine and the next day, it seems utterly repulsive and impossible.
Caroline is a composite character. The truth is, it’s easier to tell Caroline’s story than my own because, like a lot of us who struggle with sensory issues and ARFID, it is less linear and far more complex.
If my eating disorder were a tapestry, sensory issues would be the common thread that triggered, exacerbated, and contributed to other disordered eating behaviors.
For instance, my sensory challenges with the school cafeteria (the smells, the noise, and the social pressures) left me vulnerable to binging because I arrived home extremely hungry. During overstimulating summers in places with unfamiliar foods, I was praised for losing weight much too quickly. A severe bout with an undiagnosed stomach infection left me convinced that only a handful of foods would not make me sick.
Eating disorder treatment promised that if I ate a variety of foods, my GI issues would go away and I would develop positive associations with food. To survive the yucky sensations of foods in my mouth, I developed a habit of swallowing food without chewing it. As the years went by, this habit further exacerbated my GI issues and created more and more negative associations around food. I secretly felt like a recovery failure. I had learned to comply and feed myself to survive but I still disliked eating. As my digestive issues worsened, my primary association with food was pain and terror.
Understanding my experience with ARFID and sensory issues gave me a language that was important and empowering. For the first time, I learned to say more than “I don’t eat that.” I learned to describe my preferences, my GI issues, and my inconsistencies. I found an RD who discovered and successfully treated two stomach infections. Then, I had to do the very hard work of trying the foods that I feared would make me sick. With my infections treated, I learned that if I chewed, many of the foods no longer did. AND sometimes, it was really hard for my body to unlearn that fear.
I had never really learned to listen to my mouth. My mouth told me about my tolerances, how to chew, and even how to find pleasure in food. My mouth also helped connect me to others. Rather than food being a source of conflict, stress, and isolation, I now had language to explain my challenges and preferences. I still have days where overstimulation, anxiety, and or GI issues make food challenging. I also have more times where I find joy, excitement and connection through food – far more than I ever thought possible.
TIPS FOR NAVIGATING SENSORY ISSUES
If sensory issues are interfering with your relationship with food or complicating treatment from an eating disorder, here are a few things you could try:
Develop an understanding of your particular sensory sensitivities (i.e. tastes, textures, visual).
It is not uncommon to tolerate or even like the initial taste or texture of a food item, and then become repulsed as the texture/taste morphs during the chewing process (or vice versa). It is not uncommon for foods to be in conflict (i.e. you like the taste but struggle with the texture). Developing language around your food preferences is powerful. It helps you voice concerns and preferences more specifically than “I don’t like that.”
Understanding your specific sensitivities and preferences is also helpful in reclaiming foods with confidence. It is not uncommon for folks with food sensitivities to eliminate large categories of foods after a few bad experiences. Understanding your food preferences can help you adjust your food to your tolerance. For instance, perhaps you are repulsed by breads that easily dissolve into mush but you realize you can tolerate coarser breads or bread toasted to a crunchier consistency.
Understand that inconsistency is part of the complexity.
“But you ate it last week!”
Yup, that’s part of the battle. When food sensitivities are part of broader challenges with stimulation, you might find that it’s easier to eat variety on some days and not others.
You can think about it like video game life points. Let’s say your tolerance for stimulation is about 50 points per day. If you are in a space where it takes 80 points to survive your environment, you are way over capacity. It may feel next to impossible to eat anything that will result in more stimulation. If the situation only takes 20 points to survive, then maybe you can allocate 15 to eat the moderately repulsive food.
The problem is that your capacity likely shifts daily based on your nervous system. Some days, when your body is well-regulated, the creative, adventurous side of you might be excited to enjoy new foods. This is life with food sensitivities. It doesn’t make your struggle any less valid.
Limit external stimulation.
If you are sensitive to noise or auditory stimulation, try to adjust your environment while you are eating (i.e. limit noise/distractions, face a wall, remove articles of itchy clothing). Sometimes, even small modifications can make a big difference.
Practice regulating your nervous system through deep breathing, humming, stimming, etc.
It may be easier to take on sensory challenges when your body is calmer.
Chew.
To avoid yucky sensations, people with food sensitivities develop a habit of swallowing food with minimal chewing. You may even have issues chewing due to jaw tension. Poor chewing and gulping down extra air lead to digestive issues, especially bloating, gas, and stomach discomfort/pain. This is cyclical. Negative associations with food may cause a fear that food makes you ill. The assumption that the food caused discomfort may lead to unnecessarily cutting out more foods.
Get evaluated by an RD who specializes in gastrointestinal (GI) issues.
GI issues and sensory issues are often related. If digestive issues are complicating your experience with food, see an RD that does digestive sleuthing. You will likely need more than just a colonoscopy or endoscopy. A GIMAP test may be helpful to uncover digestive challenges and/or imbalances that may have gone undetected for years.
Identify safe foods based on your specific sensory needs.
As you are identifying your foods, there will likely be an intersection of reasons of why your go-to foods are “safe.” Foods may be easier to access due to sensory reasons, limited food prep/decision making, and fears regarding nutrition/health/diet culture advice. As you understand your sensory needs better, you can start to pick this apart and start to reclaim foods.
Eat regularly.
Oftentimes, parents say “Oh, eventually they’ll get hungry enough to eat it.” That’s often not true for people with sensory issues/ARFID! Waiting longer might make eating feel even more impossible. Blood sugar drops make your body more dysregulated and you may be less able to handle stimulation. Keep safe foods on hand. Carry them with you if you are out and about. One idea is to carry a bag with multiple foods that represent a variety of safe textures and flavors. Then, you have options. Sometimes starting with a safe food at a meal can make it easier to eat progressively more challenging ones.
Be gentle with yourself.
Food is a psychosocial experience. It is hard to feel weird and different. It is isolating to feel terrified and not have the words to explain. It can be devastating to not be believed. You are not alone in your struggle. Your struggle is real and valid. Celebrate small victories and keep moving forward. One bite at a time.
