Developing a Support System for families of adults affected by an eating disorder by Zuzanna Gajowiec, CEDS-C, International Chapter Chair of Ireland
Eating disorders are complex mental health conditions, characterized by disturbances in eating habits and distorted attitudes toward food, weight, and body image. They can have serious physical, emotional and social consequences that dominate an individual’s existence, with detrimental impacts on the person’s life as well as the broader family unit.
Nonetheless, with appropriate assistance, preventative measures, and timely identification, it is possible to fully recover from an eating disorder. The key is early detection and appropriate treatment, which can significantly improve the outcomes and prevent long-term health consequences.
The challenge here is that many people with eating disorders face treatment barriers or struggle to receive a proper diagnosis. Families of people with eating disorders, especially families of adults, face difficulties in obtaining medical information about the state of their loved one’s health and their course of treatment. They also struggle to find the basic information and the access to support that they need to navigate the challenges that come with their loved one’s condition.
Eating disorders and their symptoms can best be explained by multifactorial models that incorporate biological, psychological, interpersonal, and cultural factors. The inclusion of these factors in the model of eating disorders indicates that no one specific reason is known to cause them. Despite this, research has identified many risk factors, including those associated with genetics, traumatic and adverse events, and sociocultural environments.
Eating disorders and their subclinical forms pose a complex challenge to those who suffer from them – and to their loved ones. The conditions often require lengthy treatments. Also, professional intervention is critical for healing and preventing chronicity. Thus, it is essential to raise awareness of eating disorders and educate people about their warning signs and risks. A lifetime of suffering and struggle could be avoided with early intervention and preventative measures.
Adequate Support Challenges for Families with Eating Disorders
Having an eating disorder can have a profound physical, psychological, and emotional impact on an individual and their loved ones. All age groups, genders, ethnicities, and socioeconomic backgrounds are at risk of developing an eating disorder.
Often, families of eating disorder patients struggle to find the support that they need. Some reasons for the lack of support include the following:
- Lack of awareness: It is still common for people to have misconceptions about eating disorders, not realizing the impact they can have on families. This may result in families not having access to resources and support.
- Stigma: Eating disorders are stigmatized, which makes seeking help and support difficult. It may make them feel ashamed or embarrassed, and they may worry about being judged or criticized.
- Insurance barriers: Families may not have access to eating disorder treatment because of limited insurance coverage, especially when they are already facing financial strain due to illness-related expenses.
- Limited resources: Families with eating disorders have limited access to services and resources in many areas. Consequently, families may have difficulty getting care and support.
This is exactly why family involvement in treatment should not only be encouraged but should be considered essential. Families of individuals with eating disorders need more support and resources than they currently have access to.
ED Professionals: A Support System for Families Affected by an eating disorder:
A comprehensive approach to supporting families dealing with eating disorders involves education, empowerment, and equipping families with the necessary tools. Professionals need to involve parents, peers, or partners of their clients. I have found that the following key aspects support families best:
- Education is a key element in supporting families struggling with eating disorders. It involves educating people on the symptoms, the recovery process (adequate expectations about the length of recovery and strategies to avoid burnout) and treatment options for eating disorders. Education can help families better understand the challenges their loved one faces, which will enable them to provide more effective support.
- Empowerment is another crucial aspect of supporting families affected by an eating disorder. Families need to be provided with the tools and resources they require to assist with their loved one’s recovery. Communication strategies, setting of boundaries, and creating a supportive environment at home can all contribute to this. Families can feel more confident in navigating the challenges of eating disorder’ recovery if they are empowered to become active participants in the recovery process.
- Equipping families with the knowledge and skills to support their loved one’s recovery is critical. To accomplish this, consider some of the following steps:
- Connect with families battling eating disorders. Your support and guidance will help them understand the causes and symptoms of eating disorders, as well as to navigate the recovery process in a scientific manner.
- Find support groups or online communities that focus on eating disorder recovery. Connect them to such groups. They can be a great place to share resources and advice with others who are undergoing similar struggles.
- Have them attend an eating disorder recovery workshop or training program. Programs of this type are offered by a wide variety of organizations and are a great way to gain insight into recent research and treatment methods.
- Promote better eating disorder education and support in the community. Consider hosting an event or workshop on this topic at schools, churches, or other community organizations, or advocate with your local policymakers to increase funding for eating disorder treatment and prevention.
My clinical experience working with families:
I have learned to be very flexible (within professional boundaries).
We know from research and experience that a significant population of people who suffer from an eating disorder will avoid treatment. They refuse to attend appointments, don’t engage during sessions or maybe they have lost hope completely. This is why engaging with families first and working with them throughout treatment is crucial. Avoidant clients usually have very valid reasons to not want to engage. They often experienced medical trauma, coercive tactics, shaming and blaming or in milder versions were expected to engage in treatments they were not ready for. A lot of clients with severe and enduring eating disorders have lost all hope. Families remain their strongest ally and can continue to hold onto the hope and explore new treatments.
I have worked with multiple families and, in a way, indirectly with their loved ones who suffered with an eating disorder. This flexible model of work enabled most of the people to eventually give therapy another chance. Sometimes I worked with the family without the person suffering from an eating disorder first and that led to them engaging in therapy later.
Of course, such a model must be built within our professional boundaries. As a family therapist, I can work both with the whole family, start with a family session and continue with the individual or through working with an individual involve the family. If you can’t or don’t feel comfortable working with the whole family, make sure to refer to other professionals such as a family therapist, parent coach or family mentor. Work collaboratively with professionals engaging with the family.
- To keep the family involved throughout recovery.
Commonly the family member is the first person looking for help and booking appointments. I have learned to keep them engaged by sharing my contact details and informing them that they can contact and notify me about any concerns. When progress is slow, which is not uncommon and risks are high, connection with the family is crucial. I have an agreement with the client and the family that we will occasionally meet for a family session to discuss ways we can all collaborate in a clear and useful way. Those family sessions I found help the client to communicate their needs and clarify what has been helpful for them so far. Families are clear about the treatment goals and plan (so often they are completely in the dark, confused and scared to say anything). What is probably most healing for the client is not hiding eating disorder behaviours and cognitions. That prevents maladjustive adaptations in the family that enable the eating disorder and prolong secrecy.
- Education and support groups
I have learned that offering educational and support groups for family members helps me, helps the client, and helps the family. Eating disorder diagnosis creates emotional chaos. Families also complain of confusing information- therefore many family members benefit from basic education, particularly around understanding the symptoms of eating disorders and addressing the feelings of guilt. Families also benefit from learning skills. Eating disorder recovery demands skills known to mental health professionals that can extend and supplement the normal parenting skills that they already have. I also found that teaching families to have realistic expectations about the recovery process, normalizing slips and lapses and having an adequate idea about the time it takes to fully recover was important.
- Lived experience expertise.
I have realized that having someone with lived experience in my team, like a parent coach or peer support worker compliments my work. Linking families with someone who went through what they are currently going through is invaluable. The hope and inspiration they received from such sessions made a tremendous difference.
In summary, a strong support system can help families navigate this difficult journey. Recovery is always possible and when professionals empower, educate, and equip families research indicates much better outcomes (fewer relapses, longer duration between relapses, reduced hospital admissions, shorter inpatient stays and improved compliance to medication and treatment plans).
- ‘Best practice in the engagement and empowerment of families and carers affected by eating disorders’ BEAT Eating Disorders UK, 2019
- ‘Toward a more comprehensive understanding and support of parents with a child experiencing an eating disorder’, Simon Wilsch (Phd), 2023
- Family interventions for schizophrenia:a review of long-term benefits of international studies. Psychiatr Rehabil Skills. 1999;3:268–90. Falloon IRH, Held T, Coverdale JH, Roncone R, Laidlaw TM.
- Patients’ report of help provided by relatives and services to meet their needs Fleury MJ, Grenier G, Caron J, Lesage A.. Community Ment Health J. 2008;44:271–81
- Psychosocial and financial impacts for carers of those with eating disorders in New Zealand; J Eat Disord. 2022
- Deloitte Access Economics. Paying the price: the economic and social impact of eating disorders in Australia. NSW, Australia: The Butterfly Foundation; 2012. https://butterfly.org.au/wp-content/uploads/2020/06/Butterfly_Report_Paying-the-Price.pdf. Accessed on 21 Sept 2021.
- PwC. The costs of eating disorders: Social, health and economic impacts. 2015. https://www.beateatingdisorders.org.uk/uploads/documents/2017/10/the-cos. Accessed on 21 Sept 2021.
About the Author:
Zuzanna Gajowiec is a Certified Eating Disorder Specialist and Approved Consultant, Registered Family Therapist, Clinical Psychologist and an EMDR therapist. She has worked in the field of eating disorder recovery since 2013 and has experience working in various levels of care. Zuzanna currently works as a Clinical Lead in a Residential Eating Disorder Treatment Centre and in a private practice. Zuzanna is also co-founder of SupportED families –a service dedicated toeducating, equipping, and empowering families and carers of people affected by eating disorders.