Ms Nicki Wilson Dr Roger Morgan President Consultant Psychiatrist Eating Disorders Princess Margaret Association of NZ Hospital (EDANZ) Christchurch Auckland 14:00 - 16:00 WS #19: Eating Disorders Symposium 16:30 - 18:30 WS #25: Eating Disorders Symposium (Repeated)
Eating disorders My family’s experience
Nicki Wilson Parent with lived experience President of EDANZ Executive BoD F.E.A.S.T. ANZAED committee member Speaker, conference delegate, advocate
GP appointment Me – Relieved, confident, hopeful Emma – Resistant, angry, total denial Expecting Diagnosis Clear Pathway Recovery Experience Lack of knowledge, understanding, and treatment
Common Experience “Normal teenage behaviour” “Come back in a month - without your parents” “Mother needs to step back” BMI not a reliable measure on its own Delay in diagnosis and intervention : - nutritional status worsens - psychological symptoms become entrenched
Our sensible, happy, kind, honest 16 year old…? • Miserable, angry, despairing • Strange behaviour around food • Excessive exercise • Openly self critical • Failing physically and mentally • Denial & resistance
Family in Crisis What this felt like We sought: We tried: Cause Grief Disbelieving rationalising Blame Anger Bewildered negotiating Solution Frustration unsupported bribing Something Shame Desperate threatening Anything! Every member of the family affected
Misconceptions A diet taken too far - a selfish choice Dysfunctional family, childhood trauma It’s about control…. Self esteem, body image are the problem Privileged teenage girls Barriers to recovery - shame, secrecy, stigma
Stigma Scott Griffiths BPsych(Hons) 1,* , Jonathan M. Mond PhD 2 , Stuart B. Murray PhD 3 andStephen Touyz PhD 1 Studies show stigma reduces recovery rates & is correlated with longer duration of illness Our experience: • Friends • Family • Health professionals - implications for career
Guilty, Ashamed, Terrified “I don’t have the words to adequatly describe being incapable of providing my child with one of the necessities of life”
1 st appointment “I know how we must have looked to the therapist. I was a nervous wreck and my husband was sullen and angry. We’d had weeks of conflict with our daughter and watched her medical decline while we waited for the appointment…Our daughter smirked at us when I described the situation. We looked like the very stereotype of overinvolved, neurotic mother, distant father and individuating teen. But our daughter was slowly dying and didn ’t’ think she was ill, and we were really scared”
ED Service appointment • Positive • Negative Specialist knowledge No parent involvement Thorough check of vitals No information Follow up appointment in 1 No strategies week Psychiatrist’s survey - guilt Hospital Admission discussed
Hospital • Positive • Negative Safe Ltd information Weight gain Felt excluded, blamed, Dedicated compassionate incompetent Collegial alliance lacking staff Transition A break of sorts for family
What it’s like to have an eating disorder “Terrifying Scariest thing you can think of…. Have to do that six times a day!!! Felt confused, felt like I couldn’t trust myself. Felt angry, belittled, loss of dignity, loss of privacy. Eating disorder thoughts are OVERWHELMING Made me into someone I am not Constant internal dialogue/battle – exhausting Powerless to stop – wanted help, but couldn’t ask
Home Determined to return to her life Weekly appt with specialist Family therapy No collaboration between clinicians Still no understanding, knowledge or strategies Rapid psychological deterioration & weight loss
A systematic review of family caregiving in eating disorders Eat Behav. 2014 Aug;15(3):464-77. doi: 10.1016/j.eatbeh.2014.06.001. Epub 2014 Jun 19. Anastasiadou D1, Medina-Pradas C2, Sepulveda AR3, Treasure J4. “Family members supporting a loved one through an eating disorder are shown to have higher levels of carer distress than for carers of persons with other illnesses on measures of anxiety and depression”
Two more hospital admissions We felt disempowered, untrustworthy, incompetent
3 rd Admission Losing weight Traumatised Parents excluded Threatened Em would be sectioned
Something had to change
Hope, Information, Collaboration www.feast-ed.org FBT www.aroundthedinnertable.org
Understanding the Science Walter Kaye, Director of the Eating Disorders Program & Professor Dept of Psychiatry at the UC San Diego, School of Medicine fMRI scanning giving new insights into neural processes AN behavior is driven by a powerful neurobiology Anxiety reducing character to dietary restraint
Understanding the Science Walter Kaye, Director of the Eating Disorders Program & Professor Dept of Psychiatry at the UC San Diego, School of Medicine Premorbid temperament & personality traits: • Risk avoidant • Uncertainty intolerant • Sensitive to punishment • Reward insensitivity • Perfectionist • Achievement oriented
Understanding the Science Cynthia Bulik Professor of Eating Disorders in the School of Medicine at the University of North Carolina at Chapel Hill. • GWAS (Genome wide association study) ANGI • DNA methylation & Microbiome Genetically vulnerable have paradoxical response to negative energy balance Negative energy balance – a state caused by non-deliberate or deliberate dietary restriction
Understanding the Science Cynthia Bulik UNC Most people can risk temporary dietary restrictive period without consequence Dietary restriction sets into motion physiological, neurobiological, & emotional forces in those folks genetically predisposed Dieting is gateway drug for vulnerable individuals
Understanding the Science When people taught powerful neurobiological mechanisms - different relationship emerges – can’t argue with science Patient feels less blame, less guilt & more motivated to recover when understand the scientific evidence Carer learns no- one’s fault, how to support in appropriate successful ways, distress is reduced Carers & clinicians a strong united force on the same page
Knowledge empowers Recovery from an Eating Disorder is possible An eating disorder is a serious biologically influenced mental illness - not a choice Food is medicine - Nourish body & mind before talk therapy Recovery involves fighting an uphill battle against biology
Anosognosia Pertaining to an illness or disability in which the sufferer seems to be unaware of, or denies, the disability Patients with anorexia nervosa are often "anosognosic" they truly do not feel ill and they experience their own behaviors and thoughts as normal. This is not a choice or conscious denial, but rather a feature of brain dysfunction
Family-Based Treatment Also known as FBT or Maudsley Family plays a central role in treatment “Food is medicine ” - parents are responsible for all food decisions The patient seen as under the strong influence of malnutrition & unable to make choices about food & activity
Latest Treatment knowledge Latest research - unprecedented levels of success when families become centrally involved in the treatment process Multi-Family Therapy for adults • 5 day, 40 hours of treatment, 2-6 families • Allows support people to learn & practice beside their loved ones & learn together in treatment
Carer - clinician collaboration ED takes advantage of lack of common voice Undermining trust & confidence Splitting parenting partners Mistakes (inevitable) empower ED Patient cannot trust anyone Patient is left vulnerable to ED voice
Patient’s voices “ Although outwardly I must have seemed insane, inside I was secretly relieved that I was finally getting the help I needed to get my life back, and that the choice to eat was being taken away." “This is such an unbelievable, sneaky illness, I think that’s what was hardest for my parents. They couldn’t fathom how much & why I was struggling simply to eat. I’m a really honest person, so no wonder it took them a while to catch on to the lies anorexia had been forcing out of my mouth about food. I had been independent for so long that requiring me or telling me to do something was extremely foreign.” "I would tell her to leave me alone while inside I was crying out for her. When she did leave me alone (as I had asked) it proved to me that I was unloveable etc. So please mums, do not give up on your daughters. It is so very much part of AN."
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