Family Support and the Work of F.E.A.S.T.
(Families Empowered and Supporting Treatment of Eating Disorders)
By Leah Dean
Executive Director, F.E.A.S.T.
It is common practice in the medical and mental health fields that caregivers of seriously ill family members receive support for themselves as they manage the time-consuming, anxiety-producing, and emotionally draining task of caring for a loved-one undergoing treatment.
Eating Disorders (EDs) are serious mental illnesses with life-threatening medical complications. Nevertheless, too many ED caregivers still find themselves shut out of the treatment process, suspected of abuse and/or neglect of their child, accused of ‘dysfunctional parenting’ and even held responsible for having allowed the ED to develop.
F.E.A.S.T. was born with the mission of empowering ED caregivers to stand up to these false paradigms and demand information, respect, better treatments, and a place at the table with regards to their child’s treatment.
This endeavor started in 2004 with a dozen or so members who created an online forum for listening to, and learning from, each other. They soon realized that most of the symptoms and struggles they were facing as caregivers were the same, regardless of nationality, race, culture, religion, parenting style, or health care system. This group began to realize how little was known about eating disorders and how most of the standard, ‘go-to’ treatment philosophies were based on clinical instinct rather than clinical trials. They discovered that success rates were dismally low and that patients were unable to advocate for themselves to find more effective treatments because of the mistaken assumption that patients fail treatment, when, in reality, current treatment models were failing patients. These families realized that excluding parents from the treatment process simply reinforced the cycle of ineffective care, relapse, and suffering.
It is still very difficult to find good data on the effectiveness of eating disorder treatment. There are no universal standards for defining ‘successful’ outcomes, and no requirements that clinics publish or release this kind of data. In addition, patients who do not ‘succeed’ in one program often move from one facility to another until they wind up labeled as ‘non-compliant,’ or ‘chronic.’
You will usually not find a more dedicated advocate for a child’s health and well-being than their parents. Yes, there are ‘bad’ parents out there, but they are the exception rather than the rule, and the demographics of ED caregivers are no different from those who are facing a diagnosis of cancer, diabetes, OCD, or schizophrenia. Why then, have ED caregivers, particularly parents, been so thoroughly villainized for so long?
F.E.A.S.T. incorporated in 2008, as a 501(c) 3, non-profit organization registered in the USA, but active internationally. Our current Board of Directors includes individuals from the UK, Canada, Australia, New Zealand, and the United States.
That original online forum still exists today, supported by F.E.A.S.T., and is known as “Around the Dinner Table.” (ATDT) The ATDT Forum is no longer small; having served over 6,000 registered members spanning more than 40 countries, and is still growing, adding 800 to 1,000 new members each year.
To support caregivers of eating disorder patients and to reduce the suffering of our loved-ones by:
- providing evidence-based information and mutual support to caregivers,
- promoting evidence-based treatments,
- advocating for research to advance the field of eating disorders, and
- advocating for improved and widespread training of health professionals in early diagnosis and intervention.
F.E.A.S.T.’s mission statement is built around the promotion of a set of core principles. F.E.A.S.T.’s founders felt that if they could successfully integrate these principles into the ED treatment, research, and advocacy communities, that the organization would no longer be needed. Eight years later, progress has been made, but the need for F.E.A.S.T.’s services and advocacy on behalf of caregivers is still great.
To understand F.E.A.S.T’s Principles is to understand F.E.A.S.T.’s Mission. Please keep this in mind as I attempt to elaborate on each statement from the point of view of the thousands of ED caregivers who have indicated their support for them.
1) Eating disorders are biologically based mental illnesses and fully treatable with a combination of nutritional, medical, and therapeutic supports.
Twin studies and DNA analysis have shown that eating disorders are largely inherited illness where 50-80% of the risk is genetic. In addition, advances in neuroscience research have made it clear that brain chemistry, function, and structure are altered in all eating disorder patients.
Many of these brain changes are tied to poor nutritional status (overeating, undereating, or restrictive eating), and nutritionally disruptive or dangerous behaviors (bingeing, purging, or obsessive exercise). It has been shown that full nutrition repairs brain functioning, reducing mental symptoms that drive the disordered thinking and behaviors.
Knowing these facts can help families respond to an ED diagnosis with less frustration, less guilt, and an understanding that these are serious, but treatable illnesses.
2) Parents do not cause eating disorders, and patients do not choose eating disorders.
This statement may seem obvious, but it is the sad history of eating disorder treatment that parents have often been blamed or felt blamed when a loved one develops an eating disorder. These discredited and dangerous ideas were once applied to other illnesses that we now understand to be biological in nature, such as asthma, stuttering, autism, and schizophrenia. Putting such myths to rest is essential for moving ahead with developing new treatments and ending the chronic suffering and isolation that many patients experience.
3) Parents and caregivers can be a powerful support for a loved one’s recovery from an eating disorder.
Clinicians who marginalize and exclude parents from the treatment process risk isolating patients and denying them access to a very powerful treatment tool: the love, devotion, and responsibility that a parent feels for their child.
Any serious health crisis can disrupt normal family life to the point where the family may seem ‘dysfunctional.’ Caregiving is not ‘normal’ parenting, and caring for a child with an ED can be especially challenging and counter-intuitive. Parents need to be taught specific skills for dealing with an ED, such as distress tolerance and managing dangerous behaviors; and, they need to be supported when implementing these skills.
4) Blaming and marginalizing parents in the eating disorder treatment process causes harm and suffering.
Any eating disorder expert will tell you that early intervention is one of the best predictors of successful treatment. Yet, many parents will tell you that when brought to the attention of a primary care provider, their intuition was not valued, and their concerns were ignored. Parents may not be experts in eating disorders, but they usually have trusting relationships and expert knowledge of their children which guides their sense that something is just ‘not right.’
Unfortunately, when treatment is delayed until ED symptoms are much worse, serious medical complications and co-morbid conditions can arise making the illness much harder to treat.
When parent blaming is internalized by the patient, it can destroy the fundamental trust on which family relationships are built. While doctors and therapists may come and go in a patient’s life, family is the one constant that can serve as a life-long ‘early warning system,’ providing emotional and practical age-appropriate support in order to prevent future relapses.
In addition, community stigma and myth around parent blaming can further isolate families at a time when they most need support, and can lead to interventions by others who mean well, but may actually be undermining the treatment strategy.
5) Patients should receive evidence-based treatment, when available.
Informed consent is a cornerstone of medical ethics and practice. Nevertheless, in the ED field, patients and their caregivers are often not given choices as to the treatment they will receive, let alone information about what types of treatment are available, how appropriate they are based on age and diagnosis, and which are considered most effective based on randomized controlled clinical trials.
This problem is compounded by the lack of trained specialists in the newer, more effective treatments, as well as the failure to keep general health professionals up to date regarding best practices for ED treatment referrals.
6) Families should be supported in seeking the most appropriate treatment in the least restrictive environment possible.
There is no question that inpatient and residential care for eating disorder patients saves lives. However, 24/7 care comes with a high price tag and may have unintended or unwanted consequences.
For young children, care away from home can be frightening and can expose them to dangerous behaviors, such as purging or self-harm. All patients who enter higher levels of care must eventually deal with the transition to a less structured, unsupported environment.
Transitions in care are critical times for relapse as the patient may be doing well in a controlled environment, but feel overwhelmed when they find they still need supports that are hard to come by in their home environment.
Supported families can help bridge this gap by working with an outpatient treatment team to tailor the types of support needed based on the age of the patient, the home environment, the patient’s individual progress, and even co-existing psychological or medical conditions.
7) Food is medicine: all treatment should include urgent and ongoing nutritional rehabilitation.
As the name implies, eating disorders involve problems with nutritional status, and/or disordered behaviors that disrupt energy balance, brain chemistry, and physical and mental functioning. As mentioned earlier, symptoms can include extreme and/or long-term overeating, undereating, or restrictive eating; as well as, bingeing, purging, or other obsessive food or exercise related behaviors.
When patients are actively engaged in eating disordered behaviors, it is very difficult to tell what behaviors are symptoms of the illness, symptoms of malnutrition, or symptoms common to both. Addressing nutritional status immediately will help to understand the severity of the illness, and minimize symptoms that are related to malnutrition.
Unfortunately a patient’s resistance and distress will usually increase at the start of nutritional restoration (which many consider a form of behavioral modification). Tolerating this increased distress as a caregiver or clinician is key to moving treatment forward and should not prevent or delay nutritional rehabilitation until the patient is more ‘motivated’ and/or ‘compliant.’
8) When the family is supported, the patient is supported.
Once again, caregiving is not ‘normal parenting’, and when families are included and supported as part of a unified treatment team, progress can be made and maintained. Eating disorders do not fix themselves and all patients need and deserve access to effective treatment and the support of family, friends, and clinicians working together to restore their physical and mental health.
9) Siblings and parents are affected by a family member’s illness; their needs deserve full attention, too.
An eating disorder diagnosis is a serious health crisis for a family. Parents must come to terms with the fear that their loved-one may die, or become chronically ill. Many feel guilt over the idea that they could have prevented this or should have intervened earlier. Siblings struggle with similar fears, especially when they see their parents struggling and see their sibling’s symptoms worsening. Siblings may also struggle with conflicting emotions – anger at their sibling for causing this crisis, anger at their parents for ignoring their needs, and fear of what will happen to their family.
10) Parents have a unique capacity to help other parents with support, information, and the wisdom of experience.
The parents who founded the ATDT Forum recognized that they were becoming isolated within their local communities and needed the support of peers who could actually understand what they were going through.
Eating disorders can develop silently and blindside parents who thought that everything was fine until it wasn’t. Many of the early symptoms of eating disorders mimic typical stages of an adolescent’s normal emotional development, and are often dismissed as such by family, friends, and the community. Myths and stigma leave parents afraid to ask for help or even admit there is a problem; and, may cause friends to pull away in confusion or fear of associating with family members who are clearly in distress.
In addition, ED caregivers are often left in charge of the day to day details of treatment. This can include meal planning and monitoring, maintaining a ‘safe’ environment to prevent self-harm, limiting activities such as sports or socializing so as to not disrupt the pace of weight restoration or nutritional stabilization and maintenance, among other things. It is invaluable to hear what other families have tried and what has worked or not worked for them. It is even more important to know that there is hope for recovery, and that others have overcome the obstacles that you now face.
11) F.E.A.S.T. is committed to a coalition-building model of advocacy work that requires mutual respect among caregivers, professionals, and patients.
Just as treating eating disorders requires a unified front of caregivers, professionals, and patients, so does advocating for research funding, clinical trials, and improved identification and treatment protocols. We are all stakeholders in this enterprise and have similar goals: to reduce suffering, save lives, and destroy the myths and stigma surrounding eating disorders so they can be understood, identified, and eliminated.
If these things are important to you, we invite you to find out more about F.E.A.S.T., the Around the Dinner Table Forum, and show your support for our Principles by joining the thousands of families who count themselves as F.E.A.S.T. members. You can find us at www.feast-ed.org and www.aroundthedinnertable.org.
F.E.A.S.T. Recipe for Empowering Caregivers
- Start with a Family in Crisis. Imagine the fear, guilt, and sense of helpless panic the parents feel for a child diagnosed with a life-threatening illness.
- Add a generous amount of Hope. (This is a difficult ingredient to find and may require looking in a specialty store.)
- Throw in some Basic Facts about eating disorders.
- Skim off any Guilt and Shame that rise to the top.
- Let Rest, and administer Virtual Hugs daily.
- Bring in Tools for learning Self-Care, Confidence, Distress Tolerance, and Evaluating Progress.
- Repeat the following Mantra daily: “Things may get worse before they get better, but the only way out is through.”
- Answer words of Resistance and Hate with, “I Love You and will Never Give Up trying to help you.”
- Trust your Instincts and adjust if something isn’t working.
- Share your Joys, Fears, Successes, and Setbacks with others who understand.
- Celebrate Every Bite as a step closer to Recovery.
- Repeat for a New Family.
About the author:
In January of 2012, Leah Dean took over from Laura Collins as F.E.A.S.T.’s 2nd Executive Director. Leah has been an active F.E.A.S.T. volunteer since 2009. She lives in the US and has a Master’s degree in Architecture. Leah has put her organizational skills to work helping to update the F.E.A.S.T. website and to coordinate F.E.A.S.T.’s membership database. Leah is proud to be able to work towards F.E.A.S.T.’s mission of empowering parents to help their children.
“F.E.A.S.T. has an amazingly smart and talented membership of people who really want to be able to do something – anything – that will help the next family avoid the mistakes and pitfalls they have encountered. By bringing caregivers together, F.E.A.S.T. has begun to harness the energy and dedication of its members in a way that I believe will make real progress in how eating disorders are understood and treated now and in the future.”
Leah is also a member of the Academy for Eating Disorders (AED), and serves as Co-Chair of the Patient and Carer Committee. She is also a member of the 2017 ICED Planning Committee.