Friends or Foes? The internet and eating disorders
By Hannah J. Hopkins, MSW
As the internet and social media have permeated our lives, researchers have sought to investigate the impact that web usage has on mental health. Perhaps unsurprising given the variety of content and users present on the internet, results have been complicated. Understanding these results is critical for health professionals, individuals with or at risk for eating disorders, as well as friends and loved ones to understand. This article provides a review of the risks and benefits of the internet and a discussion of how to maximize benefits and mitigate risks of internet usage.
Foe: negative peer influences and misinformation
For people struggling with an eating disorder (ED), the internet is ripe with triggering images, dieting/weight loss tips, and inaccurate information. One particularly damaging corner of the internet are online communities that promote EDs, commonly known as “pro-ana” for pro-anorexia, “pro-mia” for pro-bulimia, “fitspiration”, “thinspiration”, or “thintention”. These sites are often blog-based. The blog structure allows users to document their weight loss, post pictures to “inspire” others to remain adherent to their weight loss goals, and interact with one another via a community board. Many users refer to their ED in the first person (“ana” for anorexia, “mia” for bulimia) and advocate EDs as a lifestyle choice rather than a disease. The majority of individuals who create and visit these sites are young women ages 18 to 25, although some research suggests that the average age for viewers is younger (13-15 years old). Studies have found that viewing these websites for several minutes alone can cause an increase in dieting and body dissatisfaction and lower self-esteem. These results are true even for individuals who accidentally or infrequently view the content. Where most people don’t feel comfortable promoting EDs in public due to fear of social backlash, the internet provides the anonymity and impersonality necessary for “pro-ana” communities and the like to flourish.
Although some people may argue that this risk is not of great concern for those who don’t actively seek out pro-ED content, research says differently. Many popular search engines, like Google, and video-content websites, such as YouTube, create search result lists based on the popularity of each result. This practice increases the chances that someone seeking support will encounter bad information or even material promoting EDs. One study found that almost 30% of the results retrieved in a YouTube search for the word “anorexia” were pro-anorexia material, meaning that these results promoted anorexia rather than educating viewers about this disorder. Given what we know about the negative effects that pro-ED content has on mental health, this is a particularly concerning trend.
Another risk posed by the internet is the potential for exposure to misinformation. This is particularly critical for anyone who uses the internet as their chief source of information. One research study concluded that most of the information on popular mental illness education websites was either outdated, unclear, contradictory, or factually incorrect. Another study reviewed results from 79 scholarly articles looking at the quality of health information on the web. Of those 79 research papers, 55 concluded that the internet provides poor quality health information. The abundance of misinformation related to health, mental illness, and EDs on the internet is a major point of concern.
Friend: bringing support and knowledge from the therapist’s couch to yours
Although the internet poses significant risk for individuals with EDs, it is also important to recognize the internet as an unparalleled opportunity for intervention. The new fields of “e-therapy” is rapidly growing in Western societies. E-therapies are services provided by qualified professionals using the internet (or phone-based apps) for the purpose of treatment. Using the internet as the medium for therapy allows individuals to stay anonymous, seek treatment from anywhere in the world (with an internet connection), and access treatment at a fraction of the cost as traditional, face-to-face therapies. These opportunities are particularly compelling for EDs. Studies have shown that less than a quarter of individuals with an ED actually seek treatment. Of those who do seek treatment, an even smaller percentage receive it due to barriers such as insurance coverage and location. The 75% of individuals with an ED who do not seek treatment report fear of negative stigma, shame and guilt, and lack of financial resources as reasons they did not seek treatment. Given that the internet offers people the opportunity to remain anonymous, keep their treatment private from others, and access it for little to no cost, e-therapies for EDs may prove instrumental in reaching a larger proportion of individuals who need treatment.
Not only does the internet bring therapy to the consumer, it also brings support in the form of online support groups. Unlike e-therapies, support groups are designed to promote community amongst people struggling with EDs. While these support groups may be monitored by professionals to screen for inaccurate information or inappropriate content, online support groups are not designed to be therapy. Instead, they offer a chance for individuals experiencing similar challenges to swap experiences and encouragement. Similar to e-therapies, online support groups allow users to access these services for no or low cost and remain anonymous while doing so. The importance of anonymity is particularly crucial for the ED community. Studies have found that individuals in support groups for EDs are less likely to participate when they can see their group members. The lack of physical interaction between participants in online support groups appears to boost participation and therefore increase positive results. Most people who have an ED feel very lonely, misunderstood, and ashamed of their disorder. Breaking that cycle with anonymous, low-cost, 24/7 accessible therapy and support forums is a benefit that only the internet can provide.
Where do we go from here?
Wading through the controversy surrounding the internet and its impact on mental health can be exhausting. While some benefits are clearly present, many people wonder if those benefits are worth the risks. Thankfully, there are a few steps that professionals and the public alike can take in order to make the internet their friend in combatting EDs. To combat the spread of misinformation, health professionals and educators should reinforce the importance of using scholarly, evidence-based information to make decisions regarding personal health. Consumers should be consistently reminded of what constitutes a “scholarly” source and taught how to recognize misinformation. Teaching web users this skill is particularly critical for the less computer-literate and for those who spend a significant amount of time on the computer. Additionally, major search engines should be encouraged to adjust their search algorithms to feature verified sources whose information can be trusted for accuracy instead of basing results on popularity alone. Online support forums should also be managed by professionals; this allows for inaccurate information (even if posted with the best intentions) to be screened out. By promoting the availability of current and trusted health information, individuals seeking to understand mental health and EDs can feel more comfortable using the internet as a resource.
Policing online pro-ED communities poses more challenging. Policy makers, healthcare professionals, and the public have to balance the right to free speech with the growing awareness for mental health concerns when approaching online communities. Some social media platforms have taken steps towards regulating and monitoring pro-ED pages. In 2012, Tumblr and Pinterest – two popular and widely used social media sites/apps – announced their plans to prohibit content that promotes EDs. Pinterest now shows a message with a link to the National EDs Association (NEDA) website if a user searches for pro-ED content. Facebook has instituted a similar safeguard where community members can report their concerns about a user who they believe is experiencing mental health problems. To date, social media sites have been the leaders in limiting exposure to content that promotes damaging behaviors. The efficacy, legality, and wider applicability of these policies continues to be a topic of conversation and controversy.
As e-therapies and online support forums become more available, websites should encourage users flagged as “at risk” to access these resources. Reducing the barriers that many people confront when starting treatment – notably financial limitations, guilt and fear – is a crucial step to involving people in the services they need. Online interventions could serve as a viable first contact for people at risk because they do minimize those initial barriers to a much greater degree than face-to-face intervention. Accordingly, more research is needed to refine e-therapies for efficacy and to understand what makes certain individuals a better fit for these alternative treatments.
With millions suffering from an eating disorder worldwide, important strides have been made to include parents as partners versus the antiquated system of blaming them. As the field has moved forward, we’ve seen the positive impact as parents have been supported, educated and given a voice.
In 2017 Kym Piekunka and Bridget Whitlow, LMFT set out to expand on these impressive strides by reaching out to siblings. These sisters and brothers face many challenges that often go unrecognized or are unable to be attended to given the life-saving efforts focused on their sibling. Age and developmental level also play a role in the sibling’s ability to identify and articulate feelings and needs.
To better understand their perspective, we created a 28-question anonymous and confidential sibling survey. To date, we have 282 responses from around the world including the United States, England, Ireland, Luxembourg, Japan, Canada, Saudi Arabia, and Australia. Participant ages have ranged from 9 to 55 years old.
What siblings have shared has been compelling and confirming. While experiences did vary based on the duration, severity, and proximity of and to the eating disorder, they desire the support, education and voice their parents have been afforded. It is also clear, they have unique needs under these categories that are too important to ignore.
Acknowledging The Sibling Experience
“I wish her counselors and my parents asked me how I was doing. I wish I was given more opportunities to express my pain without contributing to another crisis in the house.”
(Female – 14yrs.)
Despite the strides to acknowledge families in the eating disorder field, the term “family” generally translates to parents. In this on-going survey, our findings suggest brothers and sisters are infrequently acknowledged in the process. They report a sense of isolation. They wonder where they fit within the family system and recovery process. A deep need exists to be heard but not at the cost of bringing more stress to the family. They are experiencing a multitude of often ambivalent feelings and believe they are left to navigate the experience on their own.
Answers to the What Ifs & How-Tos
“I was never given any instruction on what to do when he would be having meltdowns or fights over meals.” (Female – 18yrs.)
Throughout the survey, sisters and brothers requested to receive education about their sibling’s eating disorder, treatment, and its implications. They have a myriad of ‘How To’ questions regarding behavioral issues, impact, mood and eating patterns. It is clear they would like to help but feel powerless as they don’t understand why their sister or brother is sick. It is not always in the best interest to include the sibling in treatment. However, it is imperative to provide them with toolkits and resources as they face their new reality.
Defining The Sibling Role
“Involvement in the process & how to help. An understanding of their recovery pathway & more concise updates of their progress to help with constantly feeling anxious & powerless. Family therapy to help address a better environment to help my sister – everyone on the same page idea.” (Male – 31yrs.)
47.87% of siblings recognized the eating disorder before the rest of the family. Affected siblings often confide in their sister or brother and ask them to keep secrets. Siblings find it necessary to mediate when arguments arise. They witness eating disorder behaviors at school and at home not seen by parents. For these siblings, they express frustration as their perspective is not considered or valued. Siblings clearly have a deep love for their brothers and sisters. They want to help, but feel left on the sidelines. Without a defined role, they disclosed feeling loneliness, anxiety, fear, anger and a sense of powerlessness.
A Sense of Self
“My sister has chronic, intractable Anorexia with Binge Purge. I have tried so much over the years. How do you love and support someone without enabling the Eating Disorder? How do you cope with the guilt of feeling like you can never do enough? Do I live my life or try to save hers?” (Female – 35yrs.)
Given that some sisters and brothers are not yet in treatment and treatment itself can be lengthy, siblings often feel tremendous guilt for wanting to live their lives. They are in the midst of their own development and are maneuvering academics, peers and cultivating their identity. Some have developed their own eating disorder, are clinically depressed, experience anxiety and other mental health issues. What they notate is that their health, problems, success and needs are overlooked. They often don’t ask for what they need fearing to push already stressed parents over the edge. Despite this fear, they need to know from their parents that they have not been forgotten and that they’re cared about as individuals.
Connecting to Other Siblings
“There isn’t any support- especially for a male with a female sister.” (Male, 20yrs.)
The desire to hear from other siblings was clear. They are aware of the parent support and information but state it does not address the sibling perspective. As with all illness, the intense stress on the family is not avoidable. Siblings simply want a place to share their experience without worrying about hurting their affected sibling or parent.
What’s Next for Sibling Support?
Learning about the life of a sibling can no longer be pushed to the side. These sibling reports should be expected, acknowledged and supported by parents, educational websites and treatment teams.
While there are few resources available now, two websites offer sibling survey and we are working on developing more. The Sibling Survey is still open. If you are a sibling and would like to take the survey, click here
Contrasting Pica Behavior for Individuals with ASD and IDD Against Presentation in the General Population – Part I
By Janice Goldschmidt, MS, RD, LDN Director of Nutrition Services Community Support Services, Inc.
(This is Part I of a 3 part series on the named topic. Part II will continue in the January 2019 E-Newsletter. And Part III will appear in the February 2019 E-Newsletter.)
This analysis is intended to introduce healthcare professionals to the patterns of pica behavior, diagnosis and treatment for those with autism spectrum disorder (ASD) and other intellectual and developmental disabilities (IDD). In so doing, it will contrast this behavior with what is understood regarding pica presentation among the general population. Pica is relatively well defined as an eating disorder, but for those with ASD and IDD this condition is manifested in distinctive patterns. It is important that healthcare professionals working within the realm of disordered eating have a measured understanding of the clinical presentation of this behavior for those with ASD and IDD and appreciate how it differs from pica in the general population.
Picais formally defined as the consumption of abnormal or unusual nonfood substances. Traditionally, pica was inclusive of various non-nutritive items that no longer fit within the diagnostic understanding of the condition, including consumption of ice and scavenging for food. Pica behavior is manifested in both genders and across the lifespan.1
ASD, a neurobiological condition with no clear biologic marker, is diagnosed through assessment of deficits in communication and social development as well as behavior rigidity.2There is a pronounced diversity of presentation and a tremendous range of abilities and impairment. Autism falls under the larger umbrella of developmental disability (DD), which is defined by severe impairments in cognitive and/or physical functioning with onset before the age of 22. Autism also has a large overlap, or comorbidity, with intellectual disability (ID). Because ASD and intellectual/developmental disability (IDD) are diagnostically related, research addressing one of these cohorts is often applicable to at least portions of the other.
Pica in the General Population
For nutrition professionals, pica is most commonly associated with pregnant women as a sporadic behaviorduring the gestation period or post-natal during breastfeeding.3,4 Pica during pregnancy is idiopathic though hypothesized as a response to nausea and/or vomiting as well as a physiological response to varied nutritional deficiencies.5 Among pregnant women geophagia — the consumption of soil or clay — is the most prevalent form of presentation.3,4See Table 1 for a listing of the most common categories of pica behavior.
Pica is also demonstrated in typically developing children, possibly as a form of tactile input or as a means of exploration. For this cohort, pica behavior is typically extinguished naturally during the progressive aging process.6Childhood prevalence for pica has been estimated between 10%-32% for children under age 6 though this figure refers to occasional episodes, rather than ongoing behavior. Children under the age of two are believed to have the highest prevalence.7
Pica has also been associated with specific medical conditions, often as a response to treatment protocols. Patients undergoing dialysis in the treatment of kidney disease have sometimes presented with pagophagia, amylophagia, and geophagia.8 Likewise, sickle cell anemia has been known to promote the ingestion of sponge or foam rubber in children and adolescents.9,10 Pica is also documented among individuals with dementia.11
In a variety of cultures and geographical regions, presentation of pica is acknowledged as a sanctioned behavior though it often coincides with pregnancy-induced pica.12-14 Culturally organized pica has been assessed in diverse contexts including rural life in India,12fertility rituals among women in East Africa,13and famine-induced pica in Europe.14 Pica is also considered medicinal in certain regions, including Peru and Bolivia.15
Overall rates of pica among the general population are not well understood, nor is there sufficient depth to studies of prevalence as they typically lack detail related to persistence, duration, and relationship with socio-cultural traditions.6 Further, as pica is generally perceived as a socially undesirable behavior, self-reports are likely to skew the clinical understanding.16 Still, the Agency of Healthcare Research and Quality reported that between 1999 and 2009 there was a 93% increase in cases of pica, the largest rise for any category of eating disorder.17
Pica in the ASD and IDD Population
In comparison with the rather narrow definition of pica in the general population, the characterization of pica for those with ASD and IDD is much more variable and often skews significantly away from the diagnostic criteria.18 That is, individuals presenting with symptoms of pica in the general population display discriminate behavior, or specific consumption of one item or class of substance (e.g., clay or starch). Among those with ASD and IDD, indiscriminate or generalized pica is more often demonstrated.11 While some of these individuals have preferred items for ingestion, others are scavengers, randomly choosing items, or are simply opportunistic (see Table 2 for comparison of pica in the general population and on the autism spectrum).
The published rates of pica in the ASD and IDD literature are highly variable, though the highest rates are identified in institutionalized settings. A record review of 70 hospital patients with ASDfound that 60% of the subjects had displayed pica behavior at some point. This was contrasted with a comparable groups of individuals with Down syndrome where pica was recorded at a prevalence of 4%.19
One review found rates of pica in institutional contexts within a range of 5.7% – 25.8%. However, the researcher noted so many differing methodologies and definitions of pica that overall patterns were difficult to discern.20,21 Studies addressing prevalence rates for individuals living in community-based settings have documented far lower rates of pica ranging from 0.2% to 4.1%.20
Cigarette pica is reported as the most commonly ingested item for individuals with ASD and IDD,22-26despite relatively low rates of documented nicotine use.27 Published research of items ingested by those with ASD and IDD are tremendously diverse (see Table 3) Studies have noted the consumption of items that would be found naturally in many residential contexts (e.g. buttons) while others are contextual or specialized (e.g. holiday ornaments). Some of the published items clearly have the potential to be lethal (e.g., broken glass, dead animals).
Despite widespread documentation of this condition for those with ASD and IDD, in the absence of overt physiological signsmost healthcare professionals would likely not probe staff regarding ingestion patterns.28 One clinical treatment plan for institutionalized individuals with ASD and IDD has been proposed.29 Williams and McAdam advocate for screening; individualized assessment and treatment programs; pica-safe environments; staff training; as well as establishment of special contexts for safety. The authors also write that those individuals who display high frequency pica likely need to have limited access to the community.29
This analysis was originally undertaken as an independent study during my graduate studies at the University of Maryland – College Park. Special thanks to Thomas Castonguay, PhD for guiding me during that research process and helping me find the appropriate focus for this paper.
Pica comes from the Latin word for a bird renowned for eating almost anything, the magpie.
Aside from ASD and ID, developmental disabilities is inclusive of a number of conditions including Cerebral Palsy as well as a range of neurogenetic, behavioral, metabolic and muscular disorders.
The role that vegetarianism can play in one’s eating disorder can frequently be multifaceted and complex. As eating disorder providers, we know that dieting or the elimination of food groups can increase the risks of developing an eating disorder or hinder one’s recovery. Not all vegetarians have eating disorders, but for those who do, it can strongly enable their distorted thoughts and behaviors. Time and again, I have clients who come in expressing a desire to transition to a vegetarian lifestyle or some who already have adopted this lifestyle. My instinctive thought is not to engage in a power struggle but to engage in curiosity. It can be a slippery slope navigating what came first, the eating disorder or the vegetarianism.
There is limited research about the correlation between eating disorders and vegetarianism, but it most certainly has a synchrony in many cases. In this article, I will illuminate what I have discerned and what I’ve witnessed while working as a dietitian specializing with those with eating disorders.
Vegetarianism, by definition, is the practice of abstaining from the consumption of meat (red meat, poultry, seafood, and the flesh of any other animal) and may also include abstention from by-products of animal slaughter. Vegetarianism may be adopted for various reasons. It can be related to the person’s health values, religious beliefs, ethical concerns for animals, or the objection to the practice of factory farming animals and growth hormones. With a plethora of food and health documentaries, finding a reason to immerse oneself in this style of living is much more accessible and straightforward to hit upon and carry out. Unfortunately, with so many of our vulnerable clients, their distortions become normalized within our “thin-ideal” society. Teenagers especially, are at a higher risk of having body image issues and becoming vegetarians for the wrong reasons. Their desire to separate from their parents while asserting themselves and expressing their individuality can be manifested by following a vegetarian lifestyle. Choosing to become vegetarian, as a teenager can be the first “informed adult decision” they make. Having this label can set them apart from their parents’ generation, while still coexisting with them. A perfect cover up for eating disorders.
A study published in the Journal of Academy of Nutrition and Dietetics found that women suffering from an eating disorder are four times more likely to be vegetarian than women without eating disorders and more that 52% of women with a history of eating disorders had been vegetarians at some point in their lives. Another study found that 61% of ED individuals who had been vegetarians believe there was a correlation between their choice of vegetarianism and their eating disorder.
An honest conversation and exploration of the motives behind eliminating animal products from one’s diet is a fundamental aspect in recovery. It is of course important to remove the competition from the conversation. Continued support and education are necessary in guiding these clients. As clinicians, we must challenge the mindset of having the label of “a vegetarian” and encourage these clients to perhaps take a break or pause from it, until they are fully recovered. We must educate them about the nutrients they are missing from a vegetarian diet and the benefits of eating animal products while in recovery. In my opinion, a vegetarian diet or lifestyle can be practiced if one desires, but after recovery.
Authentic health can be defined as one’s optimal wellbeing, a product of the synthesis of honoring your personal values, cognitions, and emotions surrounding food, while integrating balanced nutrition to meet dietary guidelines. When there is cognitive dysregulation, such as that within the context of an eating disorder, clients cannot accurately discern hunger and satiety cues or emotions, and the delicate balance of authentic health maintenance becomes difficult, if not impossible.
2002 United States Rhythmic Gymnastics Junior National Champion, 2009 United States Rhythmic Gymnastics World Championships Group Team Member
When I struggled with Anorexia Nervosa as an elite rhythmic gymnast over 15 years ago, my parents, coaches, teammates, and friends did not know what signs to look for when identifying my eating disorder. It was evident that something was changing in me for the worse; however, little knowledge about eating disorders left it difficult for these important people in my life to know what to do. Over time, my life was transformed in such a radical way through full recovery that it became my passion to help others understand the warning signs of eating disorders so those who are struggling can best be supported with the resources they need as early as possible. It is my hope that the following discussion on many of the major eating disorder warning signs in elite athletes, coupled with personal stories from my own struggle, will aid in a better understanding of how to identify these issues.
Elite athletes come in all different shapes and sizes. A national champion in rhythmic gymnastics may look strikingly different than a national champion in weightlifting at first glance, yet both athletes are at the top of their sport and share a similar desire to succeed and perform to their greatest potential. Both athletes may also be struggling with an eating disorder. Though male elite athletes are not exempt from developing eating disorders, female athletes in certain sports, such as gymnastics, diving, and figure skating, evidenced a higher risk for full-blown eating disorders (1). These aesthetic sports all share a similar element of pressure to look a particular way when executing a physical move, which often leads to a greater focus on one’s appearance. Sports that have weight classes, such as rowing or wrestling, also show a greater likelihood of athletes with eating disorders as some athletes find themselves harmfully trying to control their weight due to often strict regulations for “making weight” before a competition. Cycling is an example of a sport where low body-mass is seen as an advantage to performance, and therefore, also suggests an increased risk for eating disorders (2). Athletes from any sport, though, may be affected by an eating disorder or disordered eating due in part to their environment, which is why supporters, especially coaches, have an important role in creating an atmosphere that is one of understanding and support rather than one of harsh criticism and a win-at-all-cost attitude.
Many individuals who become elite athletes begin their sports at an early age and find themselves in the midst of various physical and mental changes associated with adolescence as they approach the height of their athletic careers. During these formative years, while athletes are spending long hours physically training, they are also mentally beginning to develop their personal views on body image and a sense of identity, or belonging. Constant self-criticism, low self-esteem, and poor and/or distorted body image are frequently displayed in those elite athletes with eating disorders. Key warning signs may also emerge when an athlete’s sole identity rests on their sport, and they become emotionally distraught when making errors, having a poor competition, or suffering from injury that prevents them from participating in the sport that gives them purpose. When one becomes so focused on being the “perfect” athlete, it is important to recognize that punishment may begin to cultivate in the form of an eating disorder as a result of perceived failure that keeps the athlete farther from reaching this unattainable level of perfection they desire. Though the individual must ultimately see him or herself as more than just an athlete, it is important for coaches, parents, friends, and other supporters to foster an environment that encourages the athlete to develop as a whole being – body, mind, and soul. Learning personal acceptance in the midst of these challenging and influential years is pivotal in nurturing a young athlete’s outlook on their identity, body image, and self-esteem, and may ultimately help to prevent the onset of an eating disorder.
Perhaps the most obvious warning sign in individuals and athletes alike who are struggling with anorexia is extreme weight loss. Weight fluctuations may be much more difficult to detect in other types of eating disorders, including Bulimia Nervosa. Especially observable in the athletic environment during training and competitions, exhaustion, prolonged fatigue, and decreased concentrationprovide warning signs, as well (3). Relating this to my experience, though once known as a persistently hard worker, I no longer had energy to get through my gymnastics routines at practice. It was physically apparent to my parents and parents of other gymnasts in the audience at competitions that I looked weak, which naturally resulted in poorer performances.
It is no secret that elite athletes spend a lot of time physically training. This is often required to reach a certain level, and when in a proper mindset, following a balanced training plan, and providing oneself with the nutrition that is needed, this is often not an issue. It may become a concern, however, when an athlete does not allow him or herself to take a rest daywhen their body needs a break, whether physically or mentally. For supporters of the athlete, it is important to be on alert for comments that suggest the athlete feels they do not deserve time off or that if they were to take time off, this rest period will automatically lead to weight gain.
Along this note is another warning sign that shows up when an athlete has already completed a hard training session and then feels compelled to exercise even more without sensing an ability to control the session. Therefore, it is important to be able to differentiate between long training hours or multiple training sessions a day that are required for a sport with that of compulsive exercisingbecause of more deeply-rooted body image issues. In my case, the mentality of the exercise that I required of myself after a long day of training was not to enhance myself as a gymnast. I was not thinking about how this exercise could help improve my performance as an athlete, but rather, it was a direct attempt to rid myself of negative feelings. This exercise became a compulsive behavior beyond training, often after meals and done in secret, so no one could observe how I was punishing myself for the shame I felt about how I looked. If I was not allowed to do this exercise or was interrupted during this time, I often became agitated and short-tempered, which was a strikingly different attitude in comparison to my usual personality during a regular gymnastics practice.
Additionally, it is not uncommon for athletes to be highly focused on nutrition, as this can be an essential component to enhanced physical performance (1). Though eating disorders are about much more than just food, there are certain warning signs to look for around food behaviors in elite athletes. Although unnoticed at the time, as I have looked back on my gymnastics career over the years, it is clear to see that there were some very apparent warning signs that I was not developing a healthy relationship with food. For example, even before I had reached elite status, I was fearful to eat around my coaches. Unfortunately, the lack of education around proper nutrition for optimal performance in sports like gymnastics can result in food being presented in a negative way. Rather than being seen as a source of energy that can enhance training and recovery, many times food becomes exclusively linked to one’s body weight, which in aesthetic sports, sometimes can dishearteningly be used by coaches as a reason against why an athlete cannot perform an element to the ideal standard. In young athletes especially, these mixed messages about food as related to personal judgment rather than fuel the body requires can lead to disordered eating behaviors, such as hiding orrestricting food for fear of consequences to their athletic performance. Coupled with issues such as identity and body image, these behaviors may develop into a full-blown eating disorder.
Hydration for an athlete can be crucial to enhanced performance and recovery, and water intake, whether restrictive or excessive,may also indicate eating disorder behaviors. Furthermore, when the body begins breaking down due to improper nutritional intake, an athlete may become more prone toinjuriessuch as bone fractures or muscle strains (3). Another common symptom of anorexia is low heart rate, which for athletes can sometimes be misinterpreted in terms of fitness levels rather than a reason for cardiac concern (4). In addition, for female elite athletes, irregular menstrual cyclesmay be a warning sign of further eating disorder complications, such as the Female Athlete Triad, which consists of energy deficiency, amenorrhea, and osteoporosis (5).
Most athletes go through periods of training that are mentally challenging. It is not always fun for a rower to wake up at dawn to row on a chilly November morning; however, many times short- and long-term goals can keep athletes moving forward through these brief phases of wavering motivation. Though interests can change over time, when an elite athlete no longer finds enjoyment from participating in their sport, this may be yet another warning sign of an eating disorder, especially when an athlete does not acknowledge their unhappiness and continues going through the motions of training so as not to disappoint themselves, their coaches, or their families. Moreover, when an athlete begins to show signs of isolation from teammates, family, and friends during meals or declines to participate in social and team bonding activities, this may also be an indication of deeper issues.
On a final note, quite often various qualities that are praised in the athletic world are similar to the characteristics that are seen in those struggling with an eating disorder, but can also be used to aid in recovery when it is understood how to use these traits in a positive way. There is no doubt my determination, discipline, and the perfectionist tendencies that I used to reach success in my gymnastics career also helped in my journey of recovery from anorexia. Ultimately, when I learned recovery did not mean changing who I was, but rather enhancing who I already am by learning about what my body individually requires nutritionally and how to constructively cope with life’s challenges, I overcame my eating disorder. I am grateful to be able to share that after three years completely away from gymnastics due to treatment, I returned to the sport I truly loved with the support of my family and coaches, and two years later achieved the goal I had set as a young gymnast to one day represent the United States at the World Championships.
Nutritional rehabilitation and weight restoration are primary goals of the overall treatment for patients with anorexia nervosa (AN) and Avoidant/Restrictive Food Intake Disorder (ARFID). Therefore, medical conditions which interfere with this goal must be considered and successfully treated if a favorable outcome is to be achieved. Three such common gastrointestinal complications, which develop as a result of the marked weight loss of AN and ARFID, are gastroparesis, superior mesenteric artery (SMA) syndrome, and diarrhea. They will be reviewed in order to enable clinicians, caring for these patients, to definitively address these potential impediments to successful weight restoration.
Gastroparesis refers to delayed emptying of the stomach due to impairment of the antral portion of the stomach’s normal contractions. This in turn, causes reduced grinding of the food and an overall slowing of the normal rate of the egress of food from the stomach. Therefore, as the food eaten during the course of a day abnormally accumulates in the stomach, the patient with gastroparesis experiences predictable feelings of fullness, nausea, bloating and early satiety during meals along with non-descript mild left upper quadrant abdominal discomfort which may impede refeeding. While weight restoration will almost always resolve this problem, medications can be temporarily utilized to hasten gastric emptying. Some commonly used medications to treat gastroparesis are metoclopramide and azithromycin. Metoclopramide has the additional benefit of being an antiemetic but is associated rarely with the development of tardive dyskinesia. Azithromycin can prolong the QTc interval on the EKG. Therefore, before starting it and a few days later, it is recommended to repeat the EKG to ensure a normal QTc interval. A nuclear medicine gastric emptying study, which is the gold standard for the diagnosis of gastroparesis, can be obtained to confirm the diagnosis of gastroparesis, but is not often needed given how common this complaint is in patients with AN and ARFID, with moderate or greater degrees of weight loss.
A second gastrointestinal issue which develops in patients with AN and ARFID and can impede refeeding is known as the superior mesenteric artery (SMA) syndrome. This develops as a direct result of the weight loss which accompanies AN and ARFID. SMA syndrome causes compression of the third portion of the duodenum. The compression occurs with weight loss because normally there is a fat pad which cushions the SMA and presents its lateral movement in the abdominal cavity. When there is significant weight loss, there is atrophy of the fat pad; this in turn allows for medial migration of the SMA, which in turn now constricts the lumen of the duodenum and blocks the passage of food through the small intestine on its normal path to the large intestine. As food then backs up from this point of obstruction, the patient experiences crampy upper abdominal pains, bloating, nausea and even vomiting of undigested food within approximately fifteen minutes of initiating their eating.
SMA syndrome should be suspected when a patient with anorexia nervosa, of moderately severe weight loss or greater, complains of the aforementioned symptoms during the early stages of their refeeding program. One can presumptively make the diagnosis in the proper clinical setting, but it might be best to definitively prove its presence by obtaining a CT scan of the abdomen with oral and intravenous contrast, and specifically requesting that the radiologist carefully look at the angle size between the SMA and the aorta. Normally, the SMA forms an approximately 45°angle (range 38°-65°) as it branches off the aorta. When the angle decreases to less than 25°, due to loss of the fat pad and the third portion of the duodenum is compressed, SMA syndrome symptoms ensue.
Treatment for SMA syndrome is a temporary change in the patients diet toward softer and more liquid calories. Surgical intervention is rarely, if ever, indicated. The treatment also includes close collaboration with a registered dietician to amend the dietary plan. Specifically, this involves dividing the dairy caloric prescription into smaller more frequent meals in addition to the softer foods or it may involve changing to an entirely oral liquid diet. Passage of a nasogastric (NG) tube may at times be necessary, or even less commonly, insertion of a nasojejunal (NJ) tube past the point of obstruction. Generally with just 5-10 pounds of weight gain, the fat pad is reconstituted and the SMA is again pushed back to its more lateral normal position, removing the compression on the duodenum.
An additional gastrointestinal factor which can impede and frustrate the refeeding plan, for patients with AN and ARFID, is the advent of diarrhea during the early stages of refeeding. Certainly in this day and age, first and foremost, an infectious etiology must be excluded. Parasites, such as Giardia, are the most common infectious agents causing diarrhea of 1 week or less and must also be excluded. Parasitic diarrhea is much less common in industrialized countries. C. difficile causes recurrent diarrhea among patients taking antibiotics in health care settings and must always be considered, especially with its increasing virulence worldwide.
Once infectious causes have been thoughtfully ruled out, other noninfectious pathologies to consider include celiac disease, irritable bowel syndrome and other forms of functional bowel disease. The evaluation for persistent diarrhea early on in the refeeding period includes a complete history and physical examination and diagnostic testing for infectious and noninfectious etiologies responsible for the patients’ symptoms. But, in the end a common additional cause to consider, which is really a diagnosis of exclusion, is a malabsorption state which accompanies marked weight loss in patients with A.N. Basically, it is directly caused by the weight loss and subsequent loss of small intestinal absorptive surface. Therefore, in essence, a new state of short-gut syndrome ensues due to the reduced intestinal absorptive area from villous atrophy, wherein calories are normally absorbed. There is actually one blood test which can be done to confirm the diagnosis, called a diamine oxidase level; it will be abnormally low in patients with AN, if the diarrhea is due to malabsorption. The treatment for this malabsorption state, which ultimately will correct itself with weight gain and nutritional rehabilitation, is to alter the diet so that the reduced absorptive area does not adversely impact weight restoration. Once again, this requires a close working relationship with an informed registered dietician to add more complex carbohydrates, to increase the protein content of the diet to reduce the amount of liquid ingested during the meal and to substitute six smaller meals instead of the traditional larger breakfast, lunch and dinner meals.
“You need to see a treatment team weekly for a year,” is often met with wide-eyed astonishment and/or disbelief. After being inpatient, people are so ready to get back to the “real world” and leave their eating disorder behind. As an inpatient therapist, it’s my job to help them understand that they need to fit their life into their recovery and not their recovery into their life. Recovery has to come first. How do you make this happen?
Most patients say maintaining recovery is really simple and yet the hardest thing they have ever done. Attending appointments is simple; talking about issues and concerns is really hard. Following a structured meal plan is a simple concept but a difficult reality. Contacting a friend is easy enough, being brutally honest about your struggles is really hard. Make the commitment to keep moving toward recovery no matter what. Keep taking steps toward recovery every day.
Before someone leaves inpatient, ask them to take a moment to assess how they feel physically, spiritually, mentally and emotionally and have them write down their answers. Next, have them compare these feelings to how they felt just prior to entering treatment. Keeping a written comparison is often a strong motivator for sustaining a recovery oriented life.
Yes, a recovery oriented life – something much different from the elusive recovery that most patients think about. Shifting to recovery as a fluid process and not something you are “in or out of” helps loosen the rigidity and opens up space for mistakes and the ability to learn from those mistakes. A recovery oriented life involves flexibility and not perfectionism for “struggling well” (recognizing your urges, admitting them, speaking them out loud, getting support to resist them). It is also owning up to any behaviors and immediately getting back on track. Again, continuing to take steps toward recovery.
The steps are many and varied – and like any other skill, one must practice. And practice more. Practice breathing, practice sharing your thoughts and feelings, practice resisting urges, practice journaling, practice meditation or mindfulness, practice thought stopping and reframing beliefs. Practice radical acceptance and opposite action. Practice whatever works and practice it over and over. Years ago we had a patient complain about how “cheesy” group activities were until one day she surprisedly admitted: “This cheesy stuff really works.”
Take the risk to allow your loved ones to support you. Before you leave treatment, let them know what you need to be successful in recovery. Explain to them how to approach you when your eating disorder is loud. Give them ammunition to help you fight your eating disorder neurochemistry – to get you out of the unending loop. You will need the help and support of all of your loved ones since the bulk of recovery happens “in the real world”.
As you rely on your loved ones more and more, your relationships will expand and deepen and become so much more rewarding. It’s these rewarding relationships that will provide the most significant buffer between you and your illness. As you experience how rewarding relationships are, you realize more and more how empty your illness truly is. The true rewards in life come from connections to people. This is probably what I hear most from former patients – how much richer their lives are because of their relationships.
These more fulfilling relationships also help you to understand yourself better. The more honest, connected and intimate your relationships are, the more you can appreciate yourself – foibles and all! You become more patient with yourself and your struggles. You are better able to learn from your mistakes and slips. You have more freedom to live a recovery oriented life – and all those skills you practiced so much become second nature. You accept life as it is even if you don’t always like how it is.
So, little by little, step by step your life transforms. Years later you realize you are living a recovery oriented life! Commit to taking steps toward recovery every day – regardless of the size of the step!
BIAS (Body Image Awareness Seminars): A new positive body image program
By Aly Bailey, PhD candidate and Kimberley Gammage, PhD
We live in a society where the rates of dieting, eating disorders, cosmetic surgeries, skin-lightening and tanning sales, and other body-altering interventions have reached all-time highs. Dissatisfaction with the body is so rampant in society that researchers call this phenomenon a norm, meaning it is abnormal for people to love their bodies. Positive body image interventions are needed now more than ever but currently they are scarce, and this is especially true for individuals outside the adolescent and university student populations. We recognized this problem and decided to create a positive body image program that would be applicable to a variety of individuals to improve body perceptions and attitudes with people in the community.
This led to the creation of BIAS (Body Image Awareness Seminars), a positive body image program that is unique in three ways: 1) it was created by working with participants, 2) it is applicable to a diversity of people including older adults and people with physical disabilities, and 3) it is grounded in the theory of positive body image. Usually body image programs have been created to specifically reduce negative body image or prevent eating disorders. These programs are important and do show promising results; however, there is a lack of body image programs that specifically target the increase of positive body image. This was in part due to limited knowledge about positive body image. Just over the last 10 years the research on positive body image has mushroomed, demonstrating that it has unique characteristics from negative body image. Interview and survey research with adolescents, young adults, older adults, ethnically and racially diverse individuals, and people with physical disabilities demonstrate consistent findings about the core characteristics of positive body image. Positive body image is understood as overall respect, acceptance, and appreciation for the body, above and beyond appearance. Research has also shown that because negative and positive body image operate separately, that it is possible to be unhappy with your appearance and still experience positive body image. This is because positive body image is not contingent on appearance but rather is a shift in focus to more internal (e.g., personality) and functional (e.g., strength) qualities.
The BIAS program was built to specifically educate and promote the core characteristics of positive body image. This occurred in three phases. The first phase involved recruiting seven stakeholders from the Brock-Niagara Centre for Health and Well-Being to help design the program. These individuals included people with spinal cord injury and multiple sclerosis, older adults, and a breast cancer survivor, all who shared their unique experiences and perceptions on designing a positive body image program. It was during this phase that participants voiced a lack of knowledge about the body image concept. It was found that education about the definition, causes, and influences of body image would be very important for improvements in positive body image to occur. Findings showed that specific positive body image activities and tools that people could implement would be essential to see improvement in people’s body image and overall quality of life. At the end of this phase, a 6-week program with 60-minute seminars was agreed upon by the group to be an appropriate length and a stakeholder came up with the clever name, BIAS.
After a few months of designing the program framework, the preliminary BIAS program was rolled out with the same stakeholders to test its effectiveness. It was agreed that nothing needed to be changed to the content but rather a re-ordering of lessons and activities would improve the flow and progression of materials. It was also decided there should be an online component to improve accessibility of content (please visit exerciseandbodyimagelab.com). Lastly, the seminar length was changed to 90-minutes to ensure enough time for group discussions.
The last phase of BIAS involved implementing it to any member at the Brock-Niagara Centre for Health and Well-Being. During this phase, 24 participants who ranged in age, ability, health, and gender, enrolled in the program. Participants completed body image measures at the start, end, and 6-weeks after the program. In addition, participants completed an interview after the conclusion of the program to share their perceptions and experiences. Body appreciation, intuitive eating, and body satisfaction all improved from the start to conclusion of the BIAS program and these improvements were sustained at the 6-week follow-up. Participants described an improved understanding of the body image concept and shared teachings and the website with friends, family, and acquaintances to help spread positive body image in the Niagara community and beyond.
The BIAS program is one of the first to be created by, and implemented for, a diversity of people including men and women, older adults, and people with various physical disabilities. A BIAS program manual is currently being created to provide a step-by-step guide for future facilitators of BIAS. Researchers, teachers, and allied health professionals are just a few examples of potential future facilitators of BIAS who may recognize the need to promote positive body image at their facilities. We are excited to expand the reach of BIAS in hopes to combat the proliferation of negative body image in society and encourage everyone to experience positive body image.