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What you Don’t Know IS Hurting Them
By: Serena Iacono & Joy Nollenberg
The Joy Project
Overview of Presentation• DSM definitions, facts about Eds
• What is healthy eating?
• Knowing the signs
• Myth busting
• Dos and don’ts
• Road blocks for treatment
• Treatment research
• Overview of Local Resources
Which Picture Contains More Women with Eating Disorders?
Answer: ???• Eating disorders come in all shapes and
sizes• While we mostly associate EDs with
extreme thinness, very few people suffering actually reach emaciation– E.g., Binge Eating Disorder is the most
common eating disorder• Often results in a high BMI• 2-5% of women AND men
DSM-IV Definitions
Anorexia Nervosa• Weight less than 85% of minimally normal
weight for height and age
• Fear of becoming fat
• Body image issues
• In women, absence of three consecutive menstrual periods
• Types– Restricting– Binging Purging
Anorexia Nervosa • 3rd most common chronic illness among
adolescents (AMA)
• Highest mortality rate of any mental disorder
• A young woman with anorexia is 12 times more likely to die than other women her same age (American Journal of Psychiatry)
• 20% of people suffering from anorexia will die from complications related to their eating disorder (Renfew Center Foundation for Eating Disorders)
• 30% receive treatment and 50% report ever being cured (APA)(NEDA)
Bulimia Nervosa• Recurrent episodes of binge eating
– In a two hour period of time, eating more than most people would eat in that same amount of time in similar circumstances
• Recurrent compensatory behavior• Average of two or more times per week• Self-evaluation influenced by body
shape/weight• Purging and non-purging type
Bulimia Nervosa• Nearly impossible to recognize by weight
and BMI alone• 19% of college age women are bulimic (Rader
Programs)
• Only 6% of sufferers ever receive treatment
• Often accompanied by other impulsive behaviors
Eating Disorder Not Otherwise Specified (EDNOS)
• At least 60% of eating disorders• Disorders of eating that does not meet the criteria
of any specific eating disorder• Anorexia symptoms
– Normal periods– Normal weight
• Bulimia symptoms– Less than twice a week– Regulatory behavior without bingeing– Chewing and spitting
Binge Eating Disorder
• Recurrent episodes of binge eating without the use of inappropriate regulatory behaviors characteristic of bulimia nervosa
• Feeling out of control when binge eating
Fluidity of Eating Disorders• Behaviors change and go through phases• Weight and amenorrhea changes as well
– Weight gain and amenorrhea
• Underlying pathology remains constant• BMI/amenorrhea are inconsistent measures of
recovery• Regardless of diagnoses, people with shared
behaviors (e.g., bingeing) have more similar pathology than if categorized by disorder.
What is Healthy Eating• Being able to eat when you are hungry
and stop when you are full• Moderate constraint, but not missing out
on pleasurable foods• Flexible. Varies in response to emotions,
your hunger, your schedule and proximity to food
• Leaving cookies on the plate, because you know you can have some tomorrow, or eating more now because they are better fresh
Know the Signs• Continual dieting after weight loss• Isolation from Friends/activities• Strange eating habits, unusual interest in food
– Eliminating an entire food group
• Obsessive exercise• Depression• ‘Perfectionist’ attitude• Body dissatisfaction • Swollen neck glands
The Myth vs.
The Reality
Common Myths about Eating Disorders
Provided by Message board members
Myth #1: “You’re not sick until you are emaciated.”
• Only a small percentage of people with EDs EVER reach the state of emaciation portrayed in the media
• Prevents treatment– Says “You’re not sick enough”– “You’re not thin enough”
• Malnutrition does NOT mean Emaciation
• EDs come in ALL sizes
Myth #2 : “The solution to all my problems is to just eat a cheeseburger”
• Eating Disorders are a MENTAL illness
• Treatment is long, difficult, and ongoing– Physical, mental, social– There is no “one” solution
• Compared to addiction
• Don’t tell anyone with and eating disorder to “just eat”
Myth # 3: “Once you reach a certain weight, you are cured.”
"When I was more into anorexia and taking laxatives every day, and being weighed by my CPN weekly. For some reason I decided I'd enough of the effects of laxatives and stopped taking them cold turkey. I gained quite a lot of water weight and it really freaked me out. When I got weighed that week, I'd obviously gained. I'd told her that I'd stopped taking the laxatives and this, coupled with the weight gain led her to say " oh that's good, you're not anorexic anymore..." Needless to say, I went out of my way to prove I was."
• EDs are a MENTAL disorder with physical complications- both
need to be treated• FORCING someone to eat does not cure her• After treatment girl is put right back in same triggering situations
– Realization of biggest fear– EDs are often used as a coping mechanism– Especially vulnerable to relapse– Need even more support
• Changing of physical identity without changing mental processes
• Weight loss is the result of psychological problems and not vice versa
• Weight gain is important, but is not the only aspect of recovery
Myth #4: “Eating disorders are just a desperate plea for attention.
Ignore it.”“I told my doctor that I thought I had an eating disorder and needed treatment. He then went out and asked my mom about my eating habits. She told him I ate nothing but a candy bar or two every day. His response? 'Oh, someone who was REALLY anorexic would NEVER eat a candy bar. She must be just trying to get attention by faking an eating disorder.'"
• MENTAL illness– May be triggered by desires, fears, psychological
problems– Depression
• Lonliness/Isolation• Belief that no one will care about them until they are in
trouble
• Regardless:– Desperate measures to get attention usually indicate
a need that is not being met– Ignoring the person only makes it worse– They NEED attention
Myth #5: “Eating Disorders are all about vanity.”
• vanity is the excessive belief in one's own abilities or attractiveness to others
• Eating Disorders are MENTAL illnesses • EDs are “about” something much deeper
– Control– Used to fix perceived internal flaws– Often manifested through abnormal focus on physical appearance
• Eating Disorders result from a FEAR, not a desire to be beautiful
• Invisibility– Sexual abuse or assault– Less likely to be victimized if unattractive.
Do’s and Don’ts
Relating to someone with an eating disorder
Don’ts• Comment on their
bodies• Discuss ANYONE’S
weight, eating habits, or appearance
• Compare
• Assume they are OK if they are not underweight
• Dismiss their fears as “crazy talk”
• Oversimplify
• Be judgmental
Do’s• Listen• Speak non-judgmentally• Validate their feelings• Remind them of their strengths and long
term goals• Give positive feedback on qualities
unrelated to appearance • Know your limitations and refer them to
appropriate professionals
Barriers to Treatment and
Recovery
Insurance Issues
• Expensive-- $30,000/month
• Insurance companies focus on medical complications or stick strict DSM definitions to determine treatment coverage
• Estimates: 1/3 of people with anorexia and 6% with bulimia in the community receive mental health care.
• 20% eating disorder experts believes that insurance companies have indirectly caused at least one of their patients to die (National Eating Disorders Association)
ED Treatment: Not Always An Option
• Problems with “All or Nothing” format of ED-specific treatment
• Leaving jobs, family, responsibility to enter an inpatient or residential facility not always feasible
• Non-urbanized areas unlikely to offer ED-specific treatment
• Transitional care often missed when insurance coverage is minimal– ‘Revolving Door’ treatment
ED Research: Still Much to Learn
An extensive analysis conducted by the Agency for Healthcare Research and Quality concluded that there are significant gaps in the evidence base provided by clinical research studies.
• Lack of research into potential harm caused by treatment methods
• Majority of studies use “samples of convenience”- usually from patients in ED-specific facilities
• Problems with validity of diagnostic categories• Average sample size in studies of AN: 23• Lack of consensus on definition of “desired outcomes”
Our Survey Results In a two-day time period, 179 individuals with a
history of ED completed our on-line survey 83% reported having participated in some form of
treatment for their eating disorder (past or current) -60% had received outpatient counseling
-34% had participated in an inpatient ED program Only 17% of respondents knew that they had adequate
insurance coverage for their eating disorder treatment 79% believed that their treatment would have been more
effective if they had a more active role in it
Results from Other Studies Summary from de la Rie, et al (2006):
Ratings of Perceived Helpfulness by ED Patients
• 63% reported negative experiences with treatment or mental health professionals
• Primary reasons for patient dropout: - No trust in treatment team
- Not feeling understood
Results from Other StudiesItems Rated Most Helpful• Treatment in Specialized ED Programs
- 63% helpful, 22% somewhat helpful
• Self Help Groups - 52.8% helpful, 24.5% somewhat helpful
Items Rated Least Helpful• General Hospital Care
- 72.5% unhelpful
• General Practitioner- 68.2% unhelpful
• Involvement of Parents in Treatment- 42.2% unhelpful
Steps of Recovery• Committing to change, choosing to fight ED• Normalizing eating patterns, nutritional
education• Identifying and challenging distorted thoughts
and beliefs• Accepting emotions, building tolerance• Tackling fear foods/situations• Identifying functions of ED and finding healthy
alternative behaviors
Steps of Recovery (cont.)• Expanding life focus beyond ED • Building interpersonal skills• Identifying and working on
underlying/contributing issues • Relapse prevention/education, learning from
relapse• Sharing experiences with others and fighting ED
on a larger scale
Introduction to Local Resources
The Joy Project
• Consumer-based eating disorder support organization
• Officially incorporated in Feb. 2006
• 501(c)(3) Public Charity– Provide more options for recovery and use
real-world workable solutions to help reduce the rate and severity of eating disorders
What We Do• In person peer-led support groups• Online recovery-support message boards• Opportunities for consumers to speak up about their
needs and experiences
• Consumer-driven advocacy and requests for change
• Comprehensive information on finding treatment and finding ways to afford it
• Collaboration with other ED organizations
• Future plans for 'recovery housing'
• What we DO NOT offer– Diagnosis– Therapy
The Emily ProgramSt. Paul, St. Louis Park, Stillwater, Duluth
• Family Therapy• Outpatient• Group Therapy
– Medically unstable patients
• Intensive Outpatient– Patients who require more structured program to
interrupt symptom use
• Intensive Day program– Intensive treatment, support, and structure– Overcome obstacles, gain healtheir coping
mechanisms, individual treatment goals
• Various Insurance options
Methodist HospitalEating Disorders Institute
St. Louis Park• Intensive Outpatient
– Transition
• Partial Day Hospital – Need nutritional and medical monitoring
• Inpatient– Medically unstable
• Binge-Eating Disorder Program
• Residential (via Anna Westin)
• Outpatient
Anna Westin HouseChaska
• Long-term residential treatment for adolescent and adult women who need substantial support and structure over a long period of time
STAR Center U of MService for Teenagers at Risk• Group Therapy
• Individual Therapy
• Outpatient Services– Young adults with eating disorders and weight
management issues
Water’s Edge Counseling & Healing Center
Burnsville
• Group Therapy– Parental involvement– Learn healthy coping mechanisms and
behavioral skills– Commit to 6 months
The End
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