No Appetite? Understanding Lack-of-Interest ARFID

While it may be hard for many of us to believe, some people rarely feel hungry and find little pleasure in eating. This can sometimes feel like a “never feeling hungry disorder,” where even foods that typically sound delicious or exciting—cake, French fries, mac and cheese—hold little appeal.

For some people, this persistent lack of interest in food can be a sign of lack-of-interest avoidant/restrictive food intake disorder (ARFID). Someone with this type of ARFID may rarely feel hungry, and when they do eat, just a few bites can be enough to make them feel satisfied.

Since they often eat a limited number of foods and small amounts of food, people with lack-of-interest ARFID tend to be underweight and experience nutritional deficiencies, which can increase the risk of health problems.

Luckily, there are effective and evidence-based treatments for this type of eating disorder, which can help anyone struggling turn up their hunger cues, comfortably eat more, and recover. If you’re concerned that you or a loved one may be dealing with lack-of-interest ARFID, read on.

What is ARFID?

ARFID is an eating disorder that involves limiting how much food you eat, the variety of foods you eat, or both. Unlike some other eating disorders, ARFID isn’t driven by weight or body image concerns. One of its three presentations involves a genuine lack of interest in eating or low appetite, which can look like never feeling hungry or getting full after just a few bites.

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Understanding lack-of-interest ARFID

Also called low appetite or low hunger ARFID, lack-of-interest ARFID is when someone has a very low innate drive to eat, explains Equip’s VP of Clinical Programs, Jessie Menzel, PhD. “They don't enjoy food that much or derive little pleasure from food or eating,” she says.

Because of this, children with lack-of-interest ARFID may have “failure to thrive,” meaning they're well below the weight and height of other children their age and sex. Similarly, some, but not all, adults with lack-of-interest ARFID may have low weight.

Symptoms of lack-of-interest ARFID

Lack-of-interest ARFID can be tricky to identify. Knowing the common symptoms can help you spot this disorder in yourself, your child, or another loved one. People with this eating disorder:

• Restrict their food intake
• Go long periods of time without eating (because they're not hungry)
• Feel full quickly after eating small amounts of food
• May take small bites
• Eat smaller meals
• Often take a long time to finish a meal
• Don't enjoy food that much
• Have a hard time tolerating fullness
• Experience stomach pain or discomfort if they eat larger meals
• Feel like they have to push themselves to eat
• Are lower in weight
• May have some sensory sensitivities to foods

What causes lack-of-interest ARFID?

Not sure why you don’t have an appetite? Although research about ARFID is still in its infancy, from what has been studied, lack-of-interest ARFID is associated with hormonal abnormalities, Menzel says. Young women with lack-of-interest ARFID have lower levels of ghrelin. Often called the “hunger hormone,” ghrelin increases appetite, which triggers us to seek out food and eat.

“In people who have anorexia nervosa, levels of ghrelin increase substantially. It's like the body turning up the volume to tell a person to eat because they're starving,” Menzel explains. “But in people of similar weight who have ARFID, the body isn't turning up levels of ghrelin. It's not trying to compensate for low weight by driving the urge to eat.”

There may be other reasons why you do not feel hungry. For instance, genetics may also play a role in the development of lack-of-interest ARFID. A 2023 twin study in JAMA Psychiatry found that inherited factors contributed approximately 79% to the diagnosis, and unshared environmental factors accounted for 21%.

Lastly, although not necessarily a cause, lack-of-interest ARFID is associated with autism, anxiety, and depression. “Early challenges with eating are associated with later developing other psychiatric disorders, but it's unclear which causes which,” Menzel says.

The risks of lack-of-interest ARFID

Any presentation of ARFID can affect someone's physical and mental health, as well as their quality of life. Here's how lack-of-interest ARFID can impact a child or adult.

Physical health risks

• Failure to thrive and stunted growth
• Delayed onset of puberty
• Nutritional deficiencies
• Gastrointestinal pain and discomfort
• Low bone mineral density

Mental health risks

• Anxiety
• Depression

Quality of life risks

People with ARFID may lack social connection, which can contribute to the development of anxiety and depression.

“Eating is so central to the way people relate to their worlds. It's social: we eat at family gatherings, school, and other times,” Menzel says. “If you don't enjoy food or struggle with it, that can be isolating. You may avoid those gatherings because you can't relate or you worry about putting your food challenges on display. That prevents the opportunity for social connection, which is huge for resiliency.”

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How is lack-of-interest ARFID treated?

Treatment for lack-of-interest ARFID starts by trying to establish regular eating, Menzel says. “In this instance, we focus a little more on increasing the volume of what they can eat as quickly as they can tolerate.”

The most common types of therapy to help with this are variations of cognitive behavioral therapy (CBT) and family-based treatment (FBT).

Cognitive behavioral therapy for ARFID (CBT-AR)

Many clinics and professionals use CBT-AR, a type of cognitive behavioral therapy specifically for ARFID and appropriate for people ages 10 and up. In this protocol, the patient progresses through four stages over the course of about 20 to 30 sessions.

In the first two stages, the patient eats three meals and two to three snacks a day at set times. “This normalizes eating, which helps prompt the body to start giving some hunger cues,” explains Evelyna Kambanis, PhD, clinical research fellow at the Massachusetts General Hospital Eating Disorders Clinical and Research Program.

As part of this, the provider may ask the patient to self-monitor their eating, providing food logs of what they consume on a daily basis. Additionally, the patient rates their hunger and fullness on a scale of one to seven before and after every meal and snack. “This helps bring greater awareness of hunger cues, because they've learned to ignore those cues,” Kambanis says.

The third stage, which has different modules for each presentation of ARFID, is the “heart of treatment,” Kambanis says.

For lack-of-interest ARFID, this stage uses interoceptive exposure: “The exercises we use help patients see that the internal bodily sensations—like bloating, fullness, and nausea—are temporary, tolerable, and not associated with long-term consequences,” Kambanis says. Because of this, over time, the patient can eat more food in terms of both volume and variety.

Though different exposures may be used, some common ones are:

• Having the patient push their belly out as far as possible for 30 or more seconds (to simulate bloating)
• Gulping two to three large glasses of water in as few sips as possible (to simulate fullness)
• Spinning in a chair for 30 seconds (to simulate nausea)

For each exposure, the patient rates their levels of stress, anxiety, and fear before, during, and after the exposure. Providers also may ask the patient how similar the physical sensation they felt during the exposure was to the feelings they have or are trying to avoid when eating.

“We coach them to sit with—rather than avoid—that anxiety and uncomfortable feelings and notice any reduction in their feelings during the course of each exposure,” Kambanis explains.

Then, whichever exposure feels most distressing, the provider assigns that as homework for the next week. Treatment also prepares patients and their families for life after ARFID treatment, including how to continue facilitating exposures.

Lastly, providers work with patients to help them develop a greater awareness of the rewarding aspect of foods, using an exercise called “the five steps.” “You mindfully describe a preferred food using sensory exploration,” Kambanis says.

One at a time, the provider asks the patient what the specific food looks, feels, smells, and tastes like and what its texture is like. To emphasize the positive aspects of the food, the provider will also ask things like what the patient likes about their preferred food and what special events it reminds them of.

“Then we ask them to incorporate those into their regular meals and snacks in the upcoming week to help them drive more pleasure in eating,” Kambanis explains.

Family-based treatment for ARFID (FBT-ARFID)

Most often used for children, this collaborative therapy gives parents a key role in recovery. It aims to “help parents feel more competent and empowered with the skills they need to manage their kid's eating challenges,” Menzel says.

Providers work with parents to identify strategies to increase the volume of meals, the refueling process, and help parents manage behaviors that may come up around mealtime. Over time, as the patient progresses, the treatment shifts to help the patient feel more comfortable managing eating on their own to the extent that they're able, Menzel adds.

Preliminary research in Contemporary Clinical Trials has found that FBT-ARFID leads to weight gain and symptom reduction for the patient, as well as increased self-efficacy for parents.

Medication for lack-of-interest ARFID

ARFID can co-occur with attention deficit hyperactivity disorder (ADHD), and some stimulant medications prescribed for this condition reduce appetite. In these instances, eating disorder professionals may recommend an appetite stimulant to help patients experience hunger cues and eat a higher volume of food, Kambanis says.

Other treatments

In addition to ADHD, people with any type of ARFID may have other diagnoses, such as autism spectrum conditions. If that is the case, healthcare providers may prescribe medication or other treatments to address these co-occurring conditions.

What to do if you’re worried that you or a loved one have lack-of-interest ARFID

If you think you or a loved one may have lack-of-interest ARFID, it’s worth seeking help. ARFID is an eating disorder that can affect physical health and quality of life, and it isn’t something you need to wait to “grow out of.” Here are a few places to start.

Educate yourself

If you’re wondering why you are never hungry, learning about ARFID can help you recognize potential symptoms and advocate for yourself or your loved one. “A lot of pediatricians are learning about ARFID,” Menzel says. “So come armed with knowledge of what it is and the symptoms.”

Seek out professionals specifically trained in ARFID

ARFID is a relatively newer diagnosis, so not every healthcare provider is familiar with it. For instance, lack-of-interest ARFID can sometimes be mistaken for anorexia nervosa, particularly when someone is underweight, Menzel says. Finding someone with specific ARFID experience can help you get an accurate diagnosis, understand the reason why you never feel hungry, and receive appropriate treatment.

Lean into preferred foods

You or your loved one likely have a short list of foods you enjoy. Work with that. “Treatment always addresses volume before diversity,” Kambanis says. “If ice cream is one of the only things they look forward to, and they need to gain weight, it's okay for them to eat a lot of it.”

Try Equip

If finding a doctor or mental health professional who understands ARFID feels difficult, you don’t have to figure out the next steps on your own. You can schedule a call with Equip to connect with a team that specializes in ARFID treatment and includes both experienced clinicians and people with lived experience of recovery.

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The bottom line

Rarely feeling hungry or having little interest in food may be a sign of lack-of-interest ARFID, especially when it makes it difficult to eat enough and begins to affect your health or daily life. ARFID is a serious eating disorder, but it is treatable, and you deserve to get support from professionals who understand the condition. If you’re concerned about yourself or someone you love, Equip’s ARFID specialists can help you figure out the next steps.

FAQ

What causes lack-of-interest ARFID?

If you’re wondering why you (or a loved one) don’t feel hungry, know that there isn’t one known cause of lack-of-interest ARFID. Research suggests that genetics and differences in hunger-related hormones may play a role. This type of ARFID is also associated with conditions like autism, anxiety, and depression.

How is lack-of-interest ARFID treated?

Treatment generally focuses on helping someone eat regularly, increase how much they can comfortably eat, and become more aware of hunger and fullness cues. Approaches may include cognitive behavioral therapy for ARFID (CBT-AR), family-based treatment (FBT-ARFID), and, in some cases, medication or treatment for co-occurring conditions.

When should I seek help for lack-of-interest ARFID?

Consider seeking help if you or a loved one regularly has little interest in food, rarely feels hungry, gets full after eating small amounts, or struggles to eat enough. ARFID can affect physical health and quality of life, so finding a healthcare professional with specific ARFID experience can help you get an accurate diagnosis and appropriate treatment.