Living Overlooked: Siblings of Young People With Eating Disorders

Date

In the last decade or so, it has been recognised that ED has damaging effects on the mental health of everyone surrounding the individual who is struggling with it. Research has indicated, for example, that parents of children with eating disorders experience severe social disruption and that the emotional impact upon caregivers is intense and long-lasting.[1] Parents are therefore often involved in the treatment and recovery process alongside their children, participating in family therapy and often attending therapy on their own to address how ED in their child is affecting them psychologically as well.

But what of the siblings of children and adolescents who are struggling with an eating disorder? Growing up alongside someone experiencing ED is by no means easy: the important role an older or younger sibling plays in a person’s life is distorted and challenged by the difficult symptoms presented by eating disorders. What’s more, the disruptions to family life and daily routines caused by the recovery process – which never occurs in a straightforward, linear way but is often a complicated lifetime process – affects siblings as much as it does the young person undergoing treatment.

Without first understanding how ED affects the lives of the siblings of those who are struggling, we cannot hope to provide support for their emotional well-being and mental health in the treatment process. 

This week, our blog will explore some of the ways in which having a sibling with an eating disorder affects young people and how we can use this knowledge to better inform family therapy practices.

Siblings as Protectors and Mediators

According to research published in the European Eating Disorders Review, one of the notable ways in which young people are affected by the eating disorder of a sibling is by feeling as though they have to take on significant responsibility for them. This study, which was based on twelve qualitative interviews with siblings of young women with anorexia nervosa (AN), suggested that the presence of the eating disorder reinforced perceived sibling roles of having to be a caregiver and supporter. The study’s authors referred to this as ‘the sibling role as protector and mediator.’[2] 

This is not necessarily a bad thing. It is normal for a person to feel a strong desire to care for and support a sibling, particularly when they are struggling with a mental health condition such as ED. And according to the authors of this study, siblings in the context of eating disorder diagnoses often experience a renewed sense of loyalty to their families and become adept at developing new coping strategies in their roles as protectors and mediators. 

However, there are downsides to being forced into this role. Some siblings, for example, will begin to equate the concept of illness with getting their emotional needs met: without the role of protector, mediator, or carer, they do not know how to seek out what they need from others. As they move into adulthood and away from their family system, these individuals may obsessively research and even factitiously report illness or behaviour they have seen in others in order to claw back some of the attention they received as carers when their sibling was struggling.

In others, this may present as withdrawal or a predisposition to drugs or alcohol, both attempts to quench or quell the stresses of being unwillingly placed in a caring role or of being overlooked by parents and other adults.

Non-Diagnosed Siblings as Marginalised or Diminished

Being overlooked is one of the most significant challenges facing siblings of young people with mental health conditions. According to research, many siblings of young people with eating disorders experience feelings of loss, sacrifice, and an overwhelming responsibility for the eating disorder. 80% of the siblings who were interviewed reported that their own quality of life was being negatively affected by their siblings’ ED.[3]

These findings reflect earlier research which has suggested that siblings of children and teenagers experience a certain degree of marginalisation by the family at large.[4] While it is understandable to consider that parents, as well as individuals who are outside the family but emotionally involved with its members, would want to pay more attention to a child who is struggling with an eating disorder – particularly given the detrimental effect they often have on physical, psychological, and emotional well-being – the result is often, sadly, that other children in the family receive less attention. 

Though young people whose siblings are struggling with ED do not necessarily report feeling ignored or completely cut out by their parents, they do often express a perceived loss in the time spent with them.[5] Parents of these children will often express feeling as though they can “just leave them be” or that “they will look after themselves”.

What’s more, young people who have siblings with ED are more often asked about their siblings by family, friends, teachers, and other concerned adults, which causes them to feel overlooked and ignored.

Unfortunately, this is also frequently true even of therapists or counsellors. If a young person does seek out therapy as the sibling of someone struggling with an eating disorder and they divulge that this is the reason they are seeking help, it is very often the case that the therapist becomes more interested in the presenting condition in the sibling. This leads to the young person becoming overlooked a second time, which recreates the original trauma of being marginalised or diminished by the family.

This can lead to a misguided need to exhibit total personal responsibility. The attitude for siblings of a person with an eating disorder becomes: if my parents/teachers/therapist are too busy caring for my sibling, I will need to look after everything in my life myself. This mindset in young people often results in anxiety, stress, or depression. In fact, research indicates that individuals who have siblings struggling with ED are more likely to experience:

  • Psychological distress 
  • Social isolation
  • Elevated familial strain
  • A decrease in quality of life
  • Anxiety
  • Depression

[6][7]

Treating Siblings of Young People With ED

In order to help prevent the development of these mental health conditions and symptoms in the siblings of young people with ED, therapists and health care professionals involved in treatment must include them. Making everyone in the family feel like they are a part of the recovery process – as well as offering them treatment options of their own – is critical to working towards a life free of disordered eating. 

Where young people are concerned, there is also a specific need to ensure that the treatment process allows them to feel as though they are their own person with individual needs, desires, hopes, and a future that is not necessarily tied to the condition of their sibling. Building this into treatment from the very beginning is crucial; therapists and health care professionals must acknowledge that siblings of those with ED are also at risk and act accordingly.

According to BEAT, the UK’s eating disorder charity, there are several best practice standards that can and should be followed to reduce the emotional or psychological distress and burden of ED on siblings. These include:

  1. Ensuring siblings are involved and supported as soon as treatment starts.
  2. Providing all siblings with honest and comprehensive information about eating disorders.
  3. Offering all siblings an assessment of their own needs and continuing to monitor their well-being throughout treatment and, where necessary, referring them to specialist services.
  4. Offering siblings options for peer-to-peer support.
  5. Providing siblings with the opportunity to give feedback throughout the treatment process.[8]

At The Wave, we make a point of including family in the recovery process for ED and all the other mental health conditions we treat. Understanding the role of siblings in the family system and how siblings are affected by an eating disorder helps foster lasting recovery for everyone involved. We specifically support siblings of those with ED as an integral part of our treatment programmes; we aim to ensure the mental health of all young people is prioritised.

To learn more, visit our website: https://thewaveclinic.com

Sources

[1] Svensson, E., Nilsson, K., Levi, R., & Suarez, N. C. (2013). Parents’ experiences of having and caring for a child with an eating disorder. Eating disorders, 21(5), 395–407. https://doi.org/10.1080/10640266.2013.827537

[2] Dimitropoulos, G. (2009) Caring for a sibling with anorexia nervosa: A qualitative study. European Eating Disorders Review. July 8,  https://doi.org/10.1002/erv.937.

[3] Areemit, R. S., Katzman, D. K., Pinhas, L., & Kaufman, M. E. (2010). The experience of siblings of adolescents with eating disorders. The Journal of adolescent health : official publication of the Society for Adolescent Medicine, 46(6), 569–576. https://doi.org/10.1016/j.jadohealth.2009.12.011

[4] Ross, K., & Handy, J. (1997) Family perceptions of anorexia nervosa: a qualitative study of two families’ histories.Paper presented at the Looking back and moving forward: 50 years of New Zealand psychology, Wellington.

[5] Whitney, J. & Eisler, I. (2005) Theoretical and empirical models around caring for someone with an eating disorder: The reorganisation of family life and inter-personal maintenance factors. Journal of Mental Health, 14(6), 575-585.

[6] Latzer, Y. et. al. (2013) Psychological Distress Among Sisters of Young Females With Eating Disorders: The Role of Negative Sibling Relationships and Sense of Coherence. Journal of Family Issues, https://doi.org/10.1177/0192513X13487672.

[7] Maon, I. et. al. (2020) Siblings of Individuals With Eating Disorders: A Review of the Literature. Frontiers in Psychiatry, 30 June. https://www.frontiersin.org/articles/10.3389/fpsyt.2020.00604/full.
[8] BEAT Eating disorders. (2019) Best practice in the engagement and empowerment of families and carers affected by eating disorders. https://beat.contentfiles.net/media/documents/family-empowerment-guidance-1_fP1wHWr.pdf

Fiona - The Wave Clinic

Fiona Yassin is the founder and clinical director at The Wave Clinic. She is a U.K. and International registered Psychotherapist and Accredited Clinical Supervisor (U.K. and UNCG).

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