This extract is from chapter 5 of the book What Does Eating Disorder Recovery Look Like? by Lucia Giombini and Sophie Nesbitt. Published by Jessica Kingsley Publishers, the book is available now.
The family’s perspective
Whilst an eating disorder reflects a complicated relationship with the self and is often caused by a unique combination of factors, such as genetics, environment and culture, family members can be a very powerful source of support through the recovery process. Family involvement cannot necessarily fix things, but the evidence base suggests that some forms of family intervention can be very effective and are a highly recommended treatment pathway for people with eating disorders. In adulthood it is recommended that family and partners are involved in treatment where possible. In many ways the family can hold the goal and hope for a happy and healthy life for the person when they are not always in a position to hold it for themselves.
Becoming a parent is a life-changing experience. From the moment the idea of a child is present in the parents’ minds, they begin to imagine and build expectations about what that child might be like. They may imagine all sorts of things for their child: what they will look like, what they will be like, what type of dreams and aspirations they may have. So much love and time goes into these thoughts and feelings. However, what they never imagine is a child, young person or adult with an eating disorder. This means that all parents from the very start of the eating disorder journey are dealing with something they never anticipated and, even harder, something that is very difficult to understand. The first question they always ask is ‘Why?’ Sadly, there is not an easy answer to this question, but of course all parents need help to deal with supporting a person through an eating disorder, as eating disorders rarely resolve on their own, and it is also very difficult to avoid the illness having an impact on the entire family. It is important for all parents to remember that they did not cause the eating disorder, and they need support and care to help their child recover as well. 
It is very hard for a parent or carer to understand how difficult it is to move away from a pattern of behaviours that are clearly destructive on a physical, social and emotional level. It is important to remember that the person trying to recover does not view the pattern of behaviours in the same way; instead they see it as a safe haven, as a sanctuary that keeps them safe from experiencing things that they might not feel able to manage. High levels of perfectionism and a strong self-critical attitude can make it challenging for you to believe that there could be anything different from the life you are experiencing in the moment. The pattern of behaviours that represent the illness have become your friend and you are fearful to let go, fearful of what change may bring. People around you may not understand this at all.
Acknowledging the need to recover from the illness is about engaging in the idea of developing a sense of identity that is free from the tyranny that the illness has created in your life. The degree to which you are aware of yourself as a separate self is dependent on the extent to which you have emerged from the family and to which the process of individuation has developed.
In terms of development, children and young people react not only to what adults say, but also to the implicit messages, values and expectations present in the surrounding environment. A child might be paid particular attention when they are obedient and quiet, or when they do things on their own without asking for help. The cause of the eating disorder is not to be sought only in the child as an individual, but also in their surroundings and their relationships with others, and the broader social context.
An eating disorder tends to freeze emotions and communication. The only conflicts that arise are around food and meals. As therapists, we often hear from family members that there have never been any previous problems. The person with the eating disorder was perhaps viewed as the easier child, the calmer adolescent or the competent young adult. In many instances their emotions have been suppressed and internalized: they never seem angry on the outside, but the internal distress develops into a pattern of emotion dysregulation, which causes suffering. The suffering causes emotional pain, psychological distress and the eating disorder behaviours.
Parents are generally ready to work towards recovery far sooner than the person experiencing the eating disorder. They may have noticed a gradual deterioration over many months; they may not have been aware of what exactly was wrong, but they knew that something was. They may have observed mood changes, behaviour changes around food, and social isolation and withdrawal. They may have noticed weight loss, weight gain, disrupted meals and frequent visits to the toilet after meals. Family tasks that once seemed pleasurable, such as going out for dinner, going for a picnic or even going for a coffee and snack, seem to have been replaced with anxiety and stress, if they are happening at all. Even though other family members may still enjoy these outings, the eating disorder becomes so powerful that it changes the behaviour of the whole family as it simply becomes too difficult. Food shopping and how this is managed also may have changed, with the person with the eating disorder showing more interest and wanting to have more control about what food choices are being made. Some may have stopped eating with the family completely, as mealtimes have become too difficult for them. Or mealtimes may have started to take up too much time, with the planning needed and then the time taken to consume the meal impacting on other areas of activities. As these changes are so gradual, parents do not necessarily realize how the family is generally accommodating so many changes. The degree of the problem can sometimes be spotted by someone outside of the family, like a friend or a teacher. Sometimes parents are able to piece it together, but it can be hard and there is often a degree of guilt and shame when parents feel they have missed changes that they should have noticed. For many parents this guilt and shame can be overwhelming.
It is important that parents access support to deal with this. Each and every family has many strengths, and it is important that the strengths are focused on, so the family can move through this process and recover as well. Guilt and shame are complex emotions that really don’t benefit the recovery process at all, and it is important that in the first step of recovery this is acknowledged. Parents need to be able to let themselves off that big hook and think aboutwhat resources they have to support the person with the eating disorder. This is a very important step in the recovery process for the family, which is not stressed enough.
Within families, when a member is taken ill, the troops tend to rally. All family members may take on a role, be it taking care of the poorly family member, helping out more around the house, taking on responsibilities, and so on. The most effective way to manage the impact of an eating disorder in the family environment is to create a culture of compassion and warmth around aspects relating to food and body image, and to promote healthy balanced eating and body image in a positive, realistic and compassionate way. It is also important to become attuned to each other’s emotions and acknowledge and validate them, even when it is hard to fully understand them.
At times when working with families, we come across parents with eating disorders, or who have had them in the past. There are many different forms this can take. The parent may be very open about this: they may take you to one side and explain that when they were growing up something similar happened. They may have accessed treatment, or they may have recovered over time alone. It is always helpful to know this as it provides a context for the family that is very real. Something that is perhaps more challenging to deal with is when a parent appears to have an eating disorder, but it is not acknowledged openly. It may be that as therapists we glimpse something in the values and attitudes that are shared in therapy. We may hear something that suggests the parent has an eating difficulty or perhaps another type of psychological illness. It is always important that over time, when the therapeutic relationship is secure and intact, some of these issues are aired in a gentle and supportive way. A parent-only session or a follow-up phone call may be offered, to create an opportunity for disclosure in private. Sometimes parents are not able to acknowledge their own struggle, or there is a degree of resistance. As therapists in these situations all we can do is try to be as compassionate as possible, but at the same time emphasize that each and every family member may need to do some work on themselves to improve the situation. On some occasions the therapist may be able to recommend a colleague who could offer a parent some individual support, and can suggest that this might feel beneficial, in the hope that this will help the parent engage with their own particular situation.