Not Hungry - Mahey Anjum by School of Art, George Mason University

For Adults with ARFID

Not Hungry

Mahey MaheyAnjum Anjum

Not Hungry

Not Hungry Mahey Anjum

Not Hungry

Copyright © 2021 Mahey Anjum All rights reserved. This book or any portion thereof may not be reproduced or used in any matter whatsoever without the express written permission of the publisher except for the use of brief quotations in a book review. Written, Designed, and Illustrated by Mahey Anjum. Edited by M. Emma Beatty. Printed by Blurb, in the United States of America. Blurb https://www.blurb.com www.maheyanjum.com

Not Hungry

Dedicated to those who are unknowingly suffering with ARFID, my family, friends, my care team, and the staff at Prosperity Eating Disorders and Wellness Center.

Not Hungry

Contents 1

Safe Foods

Facts & Figures

Signs, Symptoms, and Effects

Treatment

Recovery

Glossary

Bibliography

Not Hungry

Disclaimer This book contains personal details and experiences of the author to offer relatability and suggestions. The information provided in this book should not take the place of medical advice, treatment from your general doctor/personal physician, or a diagnosis of a medical condition. This book is not a substitute for a consultation with a licensed healthcare practitioner, such as a physician or therapist. Please consult a health care professional before you begin any healthcare program or before making any lifestyle changes. Ensure that those changes will not have harmful effects. All references and information are to aid the reader. Although the author has made every effort to ensure accuracy, they do not hold responsibility for errors such as inaccuracy or omissions resulting from any cause. The author shall not be liable for any damages, physical, emotional, or financial. Please seek help if you struggle with disordered eating behaviors or think you may be developing an eating disorder. It is vital to seek medical help and get a professional assessment and diagnosis.Your general physician is a great place to start.

Not Hungry

Preface It’s easy to let life pass you by with an eating disorder, especially when you don’t realize you have one. It can be so obvious, practically screaming at you to get help and take care of yourself.Yet you’re accommodating it every day, and it still can be missed. From an infant into adulthood, having your safe foods; having almost no appetite for years, not letting the different foods on your plate touch; using your special fork; and avoiding entire food groups, textures, colors, or smells. Everyone’s eating disorder is unique and specific to them, but there any many shared experiences in the eating disorder community. However, Avoidance Restrictive Food Intake Disorder (ARFID) is a bit of an outlier. Many people who have it have never even heard of it. That is the danger of not spreading awareness of all eating disorders. Most people have only heard of two: Anorexia Nervosa and Bulimia. I was one of those people before learning about my eating disorder. However, there are many more, and the importance of spreading awareness regarding eating disorders is priceless. I was not diagnosed with ARFID until I was 20 years old despite having it my entire life. My disorder has persisted from childhood into adulthood and resulted in many medical, mental, and physical issues that could have been treated or prevented had I been diagnosed at a much younger age. Unfortunately, ARFID was not medically established until 2013 and because it is so new, most known research and knowledge are based on 10

Not Hungry

younger children. Unfortunately, I was already well into adolescence in 2013 and my diagnosis was missed. It brings me immense relief to know that today, children with ARFID are more likely to be treated and cured before it affects their quality of life as research continues to expand. However, many adults who untreated as children still need help. My hope is for this book, is to inform and bring awareness on the effects and experiences of this disorder so adults can realize they may need help and turn their lives around before they become too sick to live their life as their eating disorder progresses. Receiving a diagnosis can be quite shattering in ways I didn’t realize. Especially because I was desperate for answers and had been in and out of hospitals for so long. Once you realize you can get help, you also realize everything that is now too late to change. It is beyond worth it to push past these feelings of regret, and explore who you are outside of this disorder and recognize how much better life can get. It took me 20 years of suffering, an intensive outpatient program at an eating disorder recovery center, a little bit of romanticizing life, and the love and support of my family and friends to realize I’m worth not letting life pass me by.

Not Hungry

Introduction I wish so badly that I had a book like this when I was at the peak of my eating disorder (ed) a few years ago. But it brings me great joy to offer what I’ve learned to those who suffered in similar ways to me without any guidance. This book goes over the different types of ARFID, signs on how to identify it, and how you can navigate through it. Contrary to the title of th book I do get hungry. However, thanks to ARFID, that has become my go-to phrase whenever I’m in a situation that presents food I’m not comfortable with. Before recovery that happened much more often than not. You are not your eating disorder. It does get better. If you’re an adult with ARFID. I’m here to help, think of this book as intro class. Let’s call it, ARFID101.

Not Hungry

Chapter 1

Safe Foods

Safe Foods My desert island food has always been bread. Except when you have ARFID it’s like you’re on desert island game restrictions at all times. In other words a strict small diet only of safe foods.

When you hear about eating disorders, most people usually think of Anorexia Nervosa or Bulimia. Where one struggles with their body image and digestion. This book is about one of the many other eating disorders you have likely never heard of: Avoidant Restrictive Food Intake Disorder, or ARFID. Nowadays, being given a diagnosis implies a plethora of resources, treatments, unsolicited advice, and being able to do a deep dive on the Internet. This is true for ailments easily recognized, but what about ARFID? 16

ARFID is a new diagnosis in the Diagnostic and Statistical Manual of the American Psychiatric Association - Fifth Edition (DSM5) as of 2013. ARFID has gone by many names before being medically established - feeding disorder, food neophobia, sensory food aversion, and others. It is an eating disorder where a person under-eats due to a lack of interest in food or an intense distaste for how certain foods feel, look, or smell. ARFID is characterized by extreme limitations in the Not Hungry

Safe Foods

types and amounts of foods consumed. This can cause weight loss, nutritional deficiencies, and growth deficiencies that become severe if left untreated. Due to taking in less than is necessary to When you hear about eating disorders, most people usually think of Anorexia Nervosa or Bulimia. Due to taking in less than is necessary to maintain a healthy diet. Most people with ARFID are brushed aside as fussy eaters, especially before 2013, often resulting in blame and a stigma of being childish and difficult. Not only is this harmful but it

is inaccurate. This insensitivity causes shame and discourages the affected from reaching out to professionals to get help. The difference between picky eating and ARFID is the intensity of anxiety undesired food brings on, ARFID leaves them feeling powerless often to a degree that entangles their entire life in the eating disorder and causes a consistently lower quality of life. This can be seen through the nutritional and medical deficiencies it brings on when the eating disorder goes untreated. medical deficiencies it brings on when the eating disorder goes untreated.

Not Hungry

Safe Foods

There is more than one type of disordered eating pattern caused by ARFID. The Three-Dimensional Model of the Neurobiology of ARFID shows how a diagnosis of ARFID can include several different types of the disorder. However, each diagnosis must involve significant distress or complications that require medical attention. DSM-5 describes three primary ARFID presentations including sensory sensitivity, lack of interest in food or eating, and fears and phobias of aversive consequences (“Avoidant Restrictive Food Intake Disorder”). Avoidant: Is categorized as a significant fear based experience with food. The fears usually revolved around vomiting and/or choking on food, they may also be tied to a physical traumatic experience (“ARFID”). Lack of Appetite: Is categorized as a group that does not want to eat but it is not based on fear or anxiety with eating, they lack an appetite or the drive to actually eat. They frequently forget to eat as well (“ARFID”). Aversive: Is categorized as a group with a sensory disinclination, causing the patient to be unable to eat due to certain textures, tastes, and even colors. Sensory aversions vary by case (“ARFID”).

It should also be mentioned that there is a sub category, ARFID Plus. It shows some signs of anorexia, such as wanting to lose weight but starts with avoidant or aversive, becoming comorbid. However, it is not a part of the 3D model. 18

Not Hungry

Safe Foods

Three-Dimensional model of the neurobiology A. Fear of physical consequences

Sensory Sensitivity

(e.g., choking phobia)

(e.g., avoids fruits & vegetables)

Lack of Interest in eating or food (e.g., skips meals, eats little)

Arousal/Regulatory

B. Combined presentation

(i.e., Lack of interest in eating or food)

(i.e., Fear of aversive consequences

Pe rc e

i.e., Sensory sensitivity

Negative Valence

Combined presentation

Not Hungry

Safe Foods

Like all eating disorders, the causes can be genetic, psychosocial, and/ or psychological

Anxiety is a large factor in the disordered eating patterns categorized as ARFID. Most of the time if you ask me why I won’t eat certain foods, I don’t have a reason and there’s a large chance that I’ve never even tried it. I’ve never been able to explain my fear of food and why it’s so intense. I’ve had panic attacks, anxiety, and full-blown breakdowns over not wanting to try new food. It’s polarizing, and I wish so badly to “just eat it,” as I’ve been told by numerous unprofessional specialists, but that is the nature of the eating disorder. Feeling out of control even though the aversion, actions, and rules I set for myself are a form of control, which is why the idea of safe foods is prevalent in all ARFID cases. Many people with ARFID will start from 20 to 30 foods in their diet and sometimes even less. These foods are often processed 20

foods that are seen as unhealthy. It’s a repetitive diet where the affected exhibit an unwillingness to try anything new and truly fear trying anything new. Most people will convince themselves that they are simply. However over time there is this progressive dropping of foods from their diet. While they might have started out with 20 foods they were willing to eat, that number may slowly become 15, then 10, and then even less (“Campbell”). Affected cases like mine will even avoid entire food groups like fruits and vegetables, often due to sensory issues. These aversions can also cause not wanting to mix different foods and ingredients like salads or salsas, as well as making sure every pile of food is separated and not touching. It can even result in a persistence to using specific flatware and utensils.

Not Hungry

Safe Foods

“Picky” or selective eating is normal until it isn’t. It is not a phase if the person can’t even sit through a family meal. Eating disorders become an incredible obstacle to overcome every single day. It causes so much social anxiety at gatherings, where food is involved. They will go to lengths to avoid events where unfamiliar foods are present such as parties, restaurant outings, and almost any celebration. When eating feels like a tedious task, it is cause for concern. However, it can mean many things and falls under different eating disorders. A person with ARFID that is not accommodated or treated will essentially end up starving themselves to avoid the pain that’s brought on at the idea of consuming fear foods. This eating disorder, like all, is valid and dangerous but the intention is different. People must seek an accurate mental health diagnosis and specialized treatment for their condition. Eating disorders should not be accommodated but met with proper treatment and empathy.

Not Hungry

Chapter 2

Facts & Figures

ARFID is NOT the same as picky eating and individuals can NOT grow out of it.

!!!

ARFID is estimated to be in 5% of children and adolescents and 9% of adults

!!!

ARFID is NOT a childhood disorder

More men than women are affected by ARFID but anyone can be at risk

NEDA

National Eating Disorder Association

Eating disorders are commonly associated with women. However, ARFID epidemiological studies have shown more affected men than women. Although epidemiological studies have shown that disorders, like Anorexia Nervosa and Bulimia, are common among women over men; eating disorders can affect any person of any body type.

Not Hungry

Facts & Figures

An epidemiological study is the foundation for disease control and prevention through tracking the prevalence of the disease, characterizing the natural history, and identifying determinants or causes of the disease. It defines risk factors for a disease and targets for preventive medicine (“UC San Diego”). Most ARFID research and studies are focused on children rather than adolescents or adults. This is because the disorder starts at a young age and if it’s diagnosed and treated early, there is a much greater chance of recovery. The addition of ARFID within the DSM5 called for more research and understanding on disordering eating patterns that fall under ARFID in adults. There are few studies on adults as opposed to on children. This study provides data and analysis on how common abnormal eating behaviors are in adults and the causes. This study also shows that this disorder is not limited to children and if the cause and category of ARFID can be identified within the adult, participating in the correct treatment instead of reinforcing disordered patterns allows for recovery.

Not Hungry

Facts & Figures

EPIDEMIOLOGICAL STUDY Food avoidance and restriction in adults: a cross-sectional pilot study According to Micheal Fitzgerald a medical researcher of Western Sydney University The procedure followed as such, “ A self-administered questionnaire was designed and distributed to adults...over the course of 6 months to describe the prevalence and nature of avoidant and restrictive eating behaviors in this population. Pearson’s chi square test was used to determine a potential link to a formal diagnosis of ARFID” (“Fitzgerald”). The results of 101 questionnaires showed that Food avoidance or restriction was detected in 81 respondents (79%), with rates not significantly higher in the immunology clinic group compared to the general practice group (p = .242). Food allergy and intolerance were the most common reasons for disturbed eating patterns. Life impact secondary to food avoidance and restriction was reported by 26% of respondents, with significantly higher rates observed in the immunology clinic cohort compared to the general practice (p = .011). Eating disturbances similar to those characteristic of ARFID are very common in adults. Many disordered eating patterns were caused by food allergies and intolerances especially within the immunology clinic population. Continued data analysis is to be done to ensure that these patterns qualify as a diagnosis of ARFID (Fitzgerald) The implications of this study are that although “picky” eating is often associated within children, diagnostic tools used by medical professionals to characterize eating disorders have recognized the existence of these eating behaviors in adults.” (Fitzgerald)

Not Hungry

Facts & Figures

A person of any race, gender, or socioeconomic status may be affected by this eating disorder. Scarcity of food is not a factor in this disorder. ARFID has primarily been studied in the United States, Canada, Australia, and Europe and even so there are not many clinical studies. However, there was a trend in psychiatric comorbidities, or other conditions seen in tandem with ARFID. Comorbid disorders have implications on how treatment can be done, targeting all disorders can possibly help with recovery in all areas or adversely make the ailments worse. ADHD medical treatments have also been known to heighten symptoms of ARFID due to a common side effect of stimulant medication is decreased appetite(“ARFID”). The current list in the DSM of lifetime comorbidity within ARFID includes: • • • • • • • •

Depression Disorders Generalized Anxiety Disorder Autism Spectrum Disorder Attention Deficit Hyperactivity Disorder Obsessive Compulsive Disorder Oppositional Defiant Disorder Selective Mutism Intellectual Disabilities

Not Hungry

Facts & Figures

In the case of comorbidity with other eating disorders; there is a distinction made between ARFID and Anorexia Nervosa and people with ARFID may not have body image issues or strive for a certain weight like other eating disorders. However, consistent weight loss and remaining underweight are potential triggers for Anorexia Nervosa. ARFID can also become comorbid or morph into Anorexia Nervosa if left untreated into adulthood. The risk and probability of someone with ARFID suffering from other issues is very high. Listing my comorbid illnesses always feels uncomfortable but visualizing it personally helps me face my troubles. In art therapy we are asked to draw our illness, the first time I did the exercise my drawing was utterly dark and terrifying. It completely engulfed me. Now, I am at a place, mentally, where I know I am separate from the illnesses. I know not to place blame on myself either, mental and physical illness don’t have to be as dark as it sounds once you make peace with it and work on recovery!

The NEDA symbol was created by the National Eating Disorders Association. The symbol represents awareness, hope, and recovery for eating disorders. Not Hungry

Chapter 3

Signs, Symptoms, and Effects

ARFID eating habits are not formed by concerns of weight. However over time the lack of weight gain can take a toll on the person, physically and mentally.

As someone who did not receive a diagnosis for something I had my entire life until I was 20, I want to caution looking down on people who self diagnosis. Not only is that judgmental classicism, but it’s also ignorant. Doctors misdiagnose patients all the time, even when a patient presents them with the correct illness. This is not to say I didn’t receive a diagnosis or that I don’t trust doctors, but to always be mindful that some doctors have biases towards marginalized people, eating disorders, or they just get it plain wrong.You know

your body best and when it comes to an eating disorder with minimal support, it can be beneficial to do what you can to research your symptoms if you feel like you are suffering from ARFID and consult a holistic team of specialists. It took me 20 years to get answers, be mindful but also trust your gut!

Not Hungry

Signs, Symptoms, and Effects

When Identifying ARFID, refer to the Three-Dimensional Model of the Neurobiology of ARFID. Model on pg. 13

Some people may fall under more than one group in the model. Once the categories of ARFID are established in the affected person, they must also fall under at least one of the following criteria to be considered for a diagnosis: weight loss or stunted growth, nutritional deficiency, dependence on feed tubes or oral supplements, and significant interference with psychosocial functioning. Two common signs between all three groups in the model are that they may consistently eat very slowly or be unable to finish what is served as well as difficulty eating meals with family or friends. According to the DSM, “malnutrition and gastrointestinal problems are common, as are developmental delays and stunted growth in children and weight loss in 30

adults.Younger children may not lose weight, but they also do not gain the weight they need to grow and thrive. Lower than normal body weight for height puts children at risk for further medical problems” “ARFID”). “The health effects of ARFID, which are also signs of the condition, are similar to those of anorexia, and include sleeping problems, thinning hair, dry skin, muscle weakness, dizziness, feeling cold, menstrual irregularities in females, poor wound healing, slowed heart rate, anemia, and impaired immunity.” (“ARFID”). Long term effects show a decrease in gastrointestinal health and increase in symptoms that fall under IBS and other chronic medical issues such as chronic nausea, vomiting, diarrhea, constipation, constant bloating ultimately leading to worsening Not Hungry

Signs, Symptoms, and Effects

I fall under group aversive and no appetite, my appetite often comes in waves. But whenever I actually had an appetite I was always nauseous and it made it that much more difficult to eat. Even when I wasn’t nauseous, many foods made me nauseous and it was a continuous vicious cycle of not being able to eat because of my mind or my body.

eat

not hungry

us yb ut too nauseo

When I got my diagnosis at 20 years old, I realized I have essentially been starving myself my entire life. The medical effects of starving yourself for even a short amount of time can be catastrophic. For reference, The Minnesota Starvation Experiment. In November 1944, physiologist, Ancel Keys, and psychologist, Josef Brozek, conducted a study at the University of Minnesota to identify the best type of rehabilitation diet for individuals who had experienced starvation. Not Hungry

Signs, Symptoms, and Effects

Minnesota Starvation Experiment The Minnesota Starvation Experiment was a study conducted in 1945. The study was meant to acquire an understanding of the physical and psychological effects of semi-starvation as well as how those who were starved during World War II could be re-fed. In order to participate in the study, 36 young men had to meet standards of good physical and mental health as well as an interest in relief and rehabilitation. The procedure consisted of: 12-weeks of a control period, followed by 24 weeks of semi-starvation, and then 12-weeks of controlled rehabilitation. As well as an additional 8 weeks of unrestricted rehabilitation for some participants. According to the University of Minnesota, “During the experiment, the participants most lost >25% of their weight, and many experienced anemia, fatigue, apathy, extreme weakness, irritability, neurological deficits, and lower extremity edema”. Despite starting the experiment in perfect physical and mental health and not being predisposed to these traits, after only six months of the experiment their physical and mental health plummeted. One of the participants stated “After you’ve not had food for a while your state of being is just numb. I didn’t have any pain. I was just very weak”. As these young men became socially withdrawn and isolated, similarly in the way an eating disorder can make an impact. Participants also mentioned, ”they felt like their concentration and judgment were impaired”. Sounds pretty familiar, right?

Not Hungry

Signs, Symptoms, and Effects

Within six months the well-being and demeanor of these young men completely shifted. Now put this into the context of someone with a lifelong eating disorder who has minimal resources and awareness that they even have an eating disorder to begin with (which is the case of most ARFID adults,) and the implications are shattering. To this day, the Minnesota Starvation Study is considered one of the most critical pieces of psycho education to share in the treatment of eating disorders. (“Duke Health”).

Not Hungry

Chapter 4

Treatment

Treatment Treatment is often conducted by a team of a doctor, therapist, and a nutritionist or a dietetic

Treatment with ARFID again refers back to the Three-Dimensional model of neurobiology of ARFID. A person can fall under more than one and the severity of each can vary, they can conduct treatment. Treatment is often conducted by a team of healthcare practitioners that specialize in eating disorders. Not Hungry

Treatment

For people that fall under Avoidance (sensory sensitivity): This group is categorized by people who often describe non-preferred foods as tasting intensely negative. Traditionally it is understood people in this category do not have experience with non-preferred foods and will come to prefer them with repeated exposure therapy. Studies have shown that even if exposure therapy can not completely eradicate a sensitivity or extreme distaste towards food that’s experimented with, the fear towards those kinds of foods is decreased. For people that fall under Lack of Interest: This group is categorized by people who often describe that they do not feel hungry at mealtimes, forget to eat, and/or feel full more quickly than others. Research suggests that these eating patterns show a decreased activation of the hypothalamus. This treatment encourages people to eat not only eat when they are hungry but to establish their own hungry cues. They must push through the lack of appetite and eat however many meals that are recommended by a healthcare practitioner on their meal plans at assigned times throughout the day. Over time this will develop into the activation of the hypothalamus and appetite will grow. For people that fall under Aversive (Physical Phobias): This group is categorized by people who often have an intense fear of food following a traumatic experience with food. Such as choking, vomiting, or abdominal pain after eating at some point in their lives. This category is not developed in the same way as the other two. It can manifest at any age and is usually because of a pre-existing vulnerability or condition that contributed to a phobic response. Essentially, the hyper activation of the defense motive system is called an amygdala hijack. Treatment focuses on reversing the amygdala hijack, trauma can be reversed. The brain is always adapting and recovery is possible.

Not Hungry

Treatment

The hypothalamus is what sends out brain appetite signals, in other words “hunger cues”.

The amygdala is a part of the brain that detects threat and controls the activates appropriate fear-related behaviors in response to threatening or dangerous stimuli.

Not Hungry

Treatment

The Three-Dimensional Neurobiological Model will not only help characterize the specific ARFID condition, but could also highlight potential risk factors for the disorder. This model can also predict long term effects and identify areas to intervene with treatment(s). For example, people that fall under more than one category in the model are more likely to relapse as opposed to those who only fall under one. In the case that you fall under more than one category your treatment will target all of your issues and design multifaceted treatments. In the case of Adults with ARFID there are more steps that can be taken such as Intensive Out-Patient Programs, Part time Hospitalization Programs, and Residency Programs. All eating disorder centers follow practices like: • Individual Therapy • Group Therapy • CBT/DBT • ACT • Mindfulness • Meal Support Additional therapies are offered at some centers like: • Acupuncture • Art Therapy • Yoga • Exploring Self Care • And Other Holistic Practices

Not Hungry

Treatment

The most important part of treatment is your recovery team. I like to call my recovery team my Care Team. The team consisted of professionals that worked together to come up with a recovery plan for me. A Primary Care physician that specializes in Eating Disorders and a therapist and dietetic I met through Prosperity. Prosperity is an eating disorder and wellness center where I participated in an Intensive Outpatient Program (IOP) for eight months. Without their help, I don’t think I could have gotten to where I am in recovery.

Not Hungry

Chapter 5

Recovery

Growing up everyone had stories about my eating habits. How I would hide food in corners of the house, only eating chips for years in the cafeteria, the panic in my eyes at an unfamiliar restaurant menu, it was just a “thing” in my family, in my neighborhood, and during school lunches. Now I’m taking control of my narrative.

I’ve come to realize that recovery is a choice. Even if you’re not where you want to be yet, even if it’s incredibly hard, and even if you just had a setback. It is a choice you make to get better. Recovery also doesn’t look the same for everyone. What you need to do may not look like what someone else needs to do.

Not Hungry

Recovery

My first suggestion is to get a journal. I do not mean a diary. I get it, I’m not one of those people either no matter how much I’d like to be. This journal is for mindful writing and the processing you will have to do as you face mental and physical work during recovery. Some prompts I did in IOP were writing letters to the ed, writing to past me about forgiveness, writing to future me about who I hope to be, and processing how I felt about food-related episodes. It was a release and a great way to understand what I was feeling. With that being said, you also need to figure out what recovery even means to you. It can be one big idea or many things such as survival, a hospital discharge, eating 3 meals every single day, expanding your diet from 5 meals to 10 meals, maintaining gained weight. The list is endless and all goals, big or small, are important. A large part of successfully treating ARFID and working with a care time is setting appropriate goals for the changes you’d like to see.

Not Hungry

Recovery

Before recovery and even during recovery, I couldn’t shake the anger of feeling like I had no control over my life and as if the life I wanted was on pause or out of reach. It felt like the rest of the world was far ahead while I am still trying to find a way to normalize eating. Another feeling nobody mentions in this process is grief. Grief for the life you could’ve had if you didn’t have this eating disorder. It hit me. Hard. It caused a long pause in my treatment and recovery because it was too difficult for me to look past everything I could’ve been or had. At some point when I decided to take steps towards getting better, I realized it isn’t healthy to hold onto these feelings. It’s not a competition when you accept that everyone goes through different things and I could make the best of things for myself. And the grief will come in waves until you remember that you still have the rest of your life to be who you want to be. It’s never too late.

I’m lucky to even be alive and once I accepted all of those “why me” feelings, I was ready to take the next step. Of course it isn’t easy but it helps to allow myself to feel any feelings without judgment. I learned about that in my IOP at Prosperity. How can you accept a feeling if you’re judging yourself for having it in the first place?

Not Hungry

Recovery

Sometimes there can be external forces that prevent you from beginning the journey of recovery. One being the lack of awareness not only in the general public but in the medical field as well. not all practitioners know about ARFID and not all eating disorder centers focus on ARFID. In my case I ran into that issue but my individual care team was more than accommodating! It helps to ask for what you need and research as much as possible. Qualified professionals in your area can be found through the Academy for Eating Disorders website’s (aedweb.org). Another issue you may come across in recovery is that one of the more prevalent medical effects of ARFID is the inability to gain weight. Gastrointestinal 44

Issues (GI) are a large part of the effects of all eating disorders and especially arfid. In many cases the GI issues of ARFID and Anorexia overlap. It took a lot of time and a lot of trial and error, with the guidance of my care team, to figure out what worked for me so that I could begin healing. Relapses, setbacks, and bad coping behaviors can crawl back in when you’re in recovery whether they’re intentional or not. Recovery isn’t linear but you have to know when to be kind to yourself and when you need to push yourself. I can’t begin to say how important it is to be around people who support you. Having a good support system is key in recovery, but that doesn’t mean your loved ones instinctively

Not Hungry

Recovery

know how to help or don’t need instructions and reminders. It is crucial to learn your needs and teach them to your loved ones. It may be uncomfortable but it makes all the difference.

disorder. My therapist reminded me that the difference between ARFID and “picky eating” is the intensity of the negative feeling and how it takes over your life and development.

Even with a support system, recovery can be lonely. Eating disorders cause an isolating experience and with ARFID it’s especially alienating even within the eating disorder community. Eating disorders have a way of pushing you to live a way that doesn’t align with your values, making you feel like you’re not in control of your life. And with ARFID being so unknown it can also be a very invalidating and confusing experience. Despite the undeniable effect ARFID has had on my life, I struggle with the legitimacy of this

It’s important to know that once you move past the initial focuses like nutrition, eating,and weight that in treatment you start to address identity, values, coping mechanisms and other predisposing or contributing issues that were lost or negatively affected in all that time you spent suffering.

Not Hungry

Recovery

In my experience, the process is difficult, some parts more than others especially when it seems like no one understands your specific experiences. That first day of being in IOP was incredibly difficult, especially meal support. I wasn’t sure if it was worth getting better because it seemed so out of reach and it was a life I couldn’t even imagine having. But with all of the support, skills, and guidance I received and the strength I installed in myself I’ve found that the more I ate the more I wanted to eat the more I actually could eat. I have so much more time to actually live my life instead of letting it pass me by as I did for most of my life before recovery. Not only that but my purpose and drive as an artist have never been stronger, and I am able to live a life I know is worth living. I also don’t feel nearly as tied to the distress of my eating disorder. My anxiety is significantly reduced and manageable, and I am able to approach food with more flexibility. I am proud of the work I have done in treatment, processing, and my ongoing recovery. I hope my experience can provide you with the information and proof you need to begin working through this eating disorder. Recovery from ARFID is possible and although I still have a ways to go, it’s worth it and so are you.

Not Hungry

Glossary All definitions are referenced from Oxford University Press’s - OxfordDictionaries.com.

Glossary

Acceptance and Commitment Therapy (ACT) - A form of therapy that encourages people to embrace their thoughts and feelings rather than fighting or feeling guilty for them Acupuncture - A form of alternative holistic medicine in which thin needles are inserted into the body Amygdala - A roughly almond-shaped mass of gray matter inside each cerebral hemisphere, involved with the experiencing of emotions Amygdala hijack - Refers to a personal, emotional response that is immediate, overwhelming, and out of measure with the actual stimulus because it has triggered a much more significant emotional threat Anorexia Nervosa - An eating disorder characterized by a distorted body image, with an unwarranted fear of being overweight ARFID - Avoidant Restrictive Food Intake Disorder, An eating disorder characterized by highly selective eating habits, disturbed feeding patterns or both ARFID Plus - Individuals present with one of the ARFID types initially, but then start to develop characteristics of anorexia nervosa such as weight and shape concern, negative body image, or avoidance of more calorically dense foods Art Therapy - A distinct discipline that incorporates creative methods of expression through visual art media Attention Deficit Hyperactivity Disorder - A chronic condition including attention difficulty, hyperactivity, and impulsiveness Autism Spectrum Disorder - a developmental disorder of variable severity that is characterized by difficulties in social interaction and communication and by restricted or repetitive patterns of thought and behavior Aversive - A category of ARFID characterized as a sensory disinclination, causing the patient to be unable to eat due to certain textures, tastes, and even colors Avoidance- A category of ARFID characterized as a significant fear based experience with food. The fears usually revolved around vomiting and/or choking on food, they may also be tied to a physical traumatic experience

Bulimia - A serious eating disorder marked by binging, followed by methods to avoid weight gain

CBT - Cognitive behavioral therapy is a psycho-social intervention that aims to improve mental health

DBT - Dialectical behavior therapy is an evidence-based psychotherapy that began with efforts to treat borderline personality disorder Depression - A mental health disorder characterized by persistently depressed mood or loss of interest in activities, causing significant impairment in daily life Diagnostic and statistical manual of the American psychiatric association fifth edition (DSM5) - Standard classification of mental disorders used by mental health professionals in the United States

Not Hungry

Glossary

Eating disorder - A range of psychological conditions that cause unhealthy eating habits to develop Epidemiological study - Measure the risk of illness or death in an exposed population compared to that risk in an identical, unexposed population Exposure therapy - A technique in behavior therapy to treat anxiety disorders. Exposure therapy involves exposing the target patient to the anxiety source or its context without the intention to cause any danger

Generalized Anxiety Disorder - is characterized by persistent and excessive worry about a number of different things. People with GAD may anticipate disaster and may be overly concerned. Individuals with GAD find it difficult to control their worry Group Therapy - Group psychotherapy or group therapy is a form of psychotherapy in which one or more therapists treat a small group of clients together as a group

Hypothalamus - The hypothalamus is a small, central region of the human brain formed by nervous fibers and a conglomerate of nuclear bodies with various functions

Intellectual Disabilities - When a person has certain limitations in cognitive functioning and skills, including communication, social and self-care skills. These limitations can cause a child to develop and learn more slowly or differently than a typically developing child Intensive Out-Patient Programs - An intensive outpatient program is a kind of treatment service and support program used primarily to treat eating disorders, bipolar disorder, unipolar depression, self harm and chemical dependency that does not rely on detoxification

Lack of Appetite - A category of ARFID characterized by a lack of appetite not based on fear or anxiety with eating, they affected essentially lack a drive to actually eat. They frequently forget to eat as well

Meal Support - The provision of emotional support during meal times, focused specifically on helping the patient to consume the food on their meal plan and redirecting behaviors that sabotage eating and recovery. Meal support can be provided individually or in a group setting Mindfulness - A mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique

Nutritionist - A nutritionist is a person who advises others on matters of food and nutrition and their impacts on health. Some people specialize in particular areas, such as sports nutrition, public health, or animal nutrition, among other disciplines

Oppositional Defiant Disorder -A disorder in a child marked by defiant and disobedient behavior to authority figures

Not Hungry

Glossary

Part time Hospitalization Programs - Also known as PHP (partial hospitalization program), is a type of program used to treat mental illness and substance abuse. In partial hospitalization, the patient continues to reside at home, but commutes to a treatment center up to seven days a week

Recovery - A process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential Rehabilitation diet - A comprehensive nutritional program for patients with especially grave nutritional deficits, such as those caused by severe eating disorders or malabsorption syndrome

Selective Mutism - A severe anxiety disorder where a person is unable to speak in certain social situations, such as with classmates at school or to relatives they do not see very often.

Three-dimensional model of the neurobiology of arfid - Abnormalities in sensory perception, homeostatic appetite, and negative valence systems underlie the three primary ARFID presentations of sensory sensitivity, lack of interest in eating, and fear of aversive consequences, respectively Trigger - In mental health terms, a trigger refers to something that affects your emotional state, often significantly, by causing extreme overwhelm or distress. A trigger affects your ability to remain present in the moment. It may bring up specific thought patterns or influence your behavior

Not Hungry

Bibliography (1) Avoidant restrictive food Intake Disorder (ARFID). (2018, February 22). https://www. nationaleatingdisorders.org/learn/by-eating-disorder/arfid (2) (Campbell) Parents May Mistake Picky Eating for a More Serious Eating Disorder . (2018, June 11). https://www.healthline.com/health-news/parents-may-mistake-pickyeating-for-a-more-serious-eating-disorder (3) UC San Diego . Epidemiology studies. https://medschool.ucsd.edu/som/medicine/ divisions/gastro/research/NAFLD/research/epidemiology/Pages/default.aspx (4) Fitzgerald, Michael, and Brad Frankum. “Food avoidance and restriction in adults: a cross-sectional pilot study comparing patients from an immunology clinic to a general practice.” Journal of eating disorders vol. 5 30. 18 Sep. 2017, doi:10.1186/s40337-0170160(5) Duke Health. (n.d.). The starvation experiment. https://eatingdisorders.dukehealth. org/education/resources/starvation-experiment (6) Oxford University Press’s OxfordDictionaries.com

Not Hungry

Not Hungry When you hear “eating disorder,” I’m sure your first thought is Anorexia or Bulimia, but what you may not know is that there are many other kinds of eating disorders. This book is about an eating disorder called ARFID. Formally known as Selective Eating disorder, this illness makes for debilitating disordered eating patterns. I have had ARFID my entire life and only found out about it a year ago. Many children with ARFID transition into adulthood without even knowing about the disorder let alone getting a diagnosis or treatment. Adults with untreated ARFID often have many physical, mental, and psychological complications and hardships. However, there is still hope and relief ahead.

Mahey Anjum

Not Hungry - Mahey Anjum

Articles inside

Facts & Figures

Signs, Symptoms, and Effects

Treatment

Safe Foods

Glossary

Recovery

Bibliography