What you Dont Know IS Hurting Them

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What you Dont Know IS Hurting Them

• By Serena Iacono Joy Nollenberg
• The Joy Project

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Overview of Presentation

• DSM definitions, facts about Eds
• What is healthy eating?
• Knowing the signs
• Myth busting
• Dos and donts
• Road blocks for treatment
• Treatment research
• Overview of Local Resources

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Which Picture Contains More Women with Eating
Disorders?

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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

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DSM-IV Definitions
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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

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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)

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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

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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

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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

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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

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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.

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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 ?

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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

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The Myth vs. The Reality

• Common Myths about Eating Disorders
• Provided by Message board members

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Myth 1 Youre 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 Youre not sick enough
• Youre not thin enough
• Malnutrition does NOT mean Emaciation
• EDs come in ALL sizes

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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
• Dont tell anyone with and eating disorder to
  just eat

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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."

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• 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

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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.'"

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• 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

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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.

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Dos and Donts

• Relating to someone with an eating disorder

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Donts

• Dismiss their fears as crazy talk
• Oversimplify
• Be judgmental

• Comment on their bodies
• Discuss ANYONES weight, eating habits, or
  appearance
• Compare
• Assume they are OK if they are not underweight

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Dos

• 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

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Barriers to Treatment and Recovery
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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)

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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

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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

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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

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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

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Results from Other Studies

• Items 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

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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

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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

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Introduction to Local Resources

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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

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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

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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

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Methodist HospitalEating Disorders InstituteSt.
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

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Anna Westin HouseChaska

• Long-term residential treatment for adolescent
  and adult women who need substantial support and
  structure over a long period of time

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STAR Center U of MService for Teenagers at Risk

• Group Therapy
• Individual Therapy
• Outpatient Services
• Young adults with eating disorders and weight
  management issues

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Waters Edge Counseling Healing
CenterBurnsville

• Group Therapy
• Parental involvement
• Learn healthy coping mechanisms and behavioral
  skills
• Commit to 6 months

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The End