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.