Supporting young people and their families as they navigate recovery when living with an eating disorder is complex. Clinicians working in the field can draw on a plethora of research that takes a biological and medical approach to eating disorder treatment, but it’s not the whole picture. Historically, the majority of research has focused on why eating disorders develop, the different clinical features of the illness, and how treatment can positively impact symptoms. However, two clinicians at Elysium’s Rhodes Wood Hospital believe a critical aspect has long been under-represented – the psychological journey of recovery for the individual and their families.
In their new book, What Does Eating Disorder Recovery Look Like?, Clinical Psychologists Lucia Giombini and Sophie Nesbitt from Rhodes Wood Hospital explore this topic in depth, with input from people with lived experience. Here, Sophie tells us why she and Lucia reached out to former patients and their families to write a book designed to address the psychological experience of the individual and give those struggling valuable guidance and hope for recovery.
Hi Sophie, thanks for talking to us about your book, What Does Eating Disorder Recovery Look Like?. Why did you co-author this book, and what inspired you to focus on this particular element of eating disorders?
“Lucia and I were keen to broaden the conversation around eating disorders. We wanted to move away from the idea of treatment approaches – there are a lot of manuals and books about that – and instead think about the journey of recovery. For some people, it can be a long journey, and recovery can take a long time, so we wanted to talk more about the process.
“We felt it was important to share the experiences of our patients, which they had kindly shared with us – the twists and turns of the journey and how you can face setbacks that you weren’t expecting. We also wanted to take into account that a recovery can involve relapse, but you can move forward again – there’s a fluidity to the process.”
You wrote the book with Lucia Giombini, who also works with patients at Rhodes Wood Hospital. How did the idea of collaborating on this book come about?
“It was the late Professor Bryan Lask who introduced me to Lucia and suggested she might be a good fit for Rhodes Wood. She was living in Italy at the time, so we interviewed her and offered her the job, and she relocated to take the role. We were very fortunate to get Lucia because she’s very experienced in the field of eating disorders. Lucia and I share a passion, and we wanted to write about it. Working with Lucia was a very positive experience. Her approach is very academic and I am more clinically driven, so we complemented each other well.”
The book was co-produced with patients and families you had previously worked with. You wrote to them and asked them to share their thoughts on unanswered questions they had or questions they were too afraid to ask. Why did you do that?
“We wanted to write something that presented an alternative perspective to our clinical one, and felt the most relevant alternative was that of our patients and their families. Also, as clinicians who’ve had a lot of contact with people with lived experiences, we’ve always felt we learnt a great deal from them, and we wanted to bring that potential for learning into the book. Even now, there are some young people I work with that I would love to have listen to someone with lived experience. I wonder if that might be the thing that helps them believe they can recover, as talking to someone who’s been through it as well is very powerful.”
What did reaching out to people with lived experience and their families reveal to you?
“I was moved by their interest in trying to make a difference for people going through it, which struck me as quite courageous. Sometimes going back can be triggering for all sorts of reasons, so I was surprised by how many people were willing to reconnect with their painful experience and share with the view of making it better for others. We were inundated with replies, and there was great generosity from people sharing their emotional experiences and their internal worlds with us.
“I think the parents of young people with eating disorders that we spoke to found it therapeutic to share what they’ve been through. There is a huge connection between being appraised as a good parent and feeding your child. So, to reach a point where your child won’t eat the food that you’re producing is very painful and rejecting. They saw a real benefit in sharing their experiences.”
How was Elysium Healthcare involved in What Does Eating Disorder Recovery Look Like?
“Elysium has always been very supportive with our research and our writing, and they wanted to be part of that experience with us. Normally, when you’re a clinician, it can be a bit of a battle to do research and write books because it takes away from clinical time, and that is what’s in demand. But Elysium were really supportive of what we were doing and embraced it, and I feel very grateful that they believed in us.”
As you say in your book, most of the research on eating disorders has adopted a biological and medical approach. Do you think this has been done at the expense of trying to understand more about the psychological experience of the individual?
“I don’t think it’s straightforward, which makes this a difficult question to answer. Adolescence is a unique developmental period in which a lot of things go on in the body and brain of a young person. If we miss the window for development in adolescence for any reason (for example, in anorexia for starvation reasons), puberty can be missed, and growth development and emotional development can be stunted. The physical health consequences of an eating disorder in adolescence are vast, and, because of that, the physical health side of treatment has always been prioritised. I think that’s right because if we miss that window, we have a lot more work to do, but also, some physiological markers can’t be repaired.
“So, while I completely understand the need for physical health monitoring and support, I believe it needs to come in tandem with psychological support. It is the psychological changes that maintain the physical health recovery. If we don’t get the psychological shifts and the psychological treatment in, the ability of the young person to maintain and understand their recovery becomes quite limited. Therefore, it’s very important that it runs alongside physical restoration.”
What causes eating disorders? Is it just a desire to alter one’s body shape or weight?
“The desire to alter one’s body shape or weight stems from pain or trauma with other aspects of a young person’s life that they can’t connect to or understand. So, all their pain and trauma get located into body dissatisfaction, whereas actually, it’s about other things they maybe can’t or don’t understand.
“Body shape or weight dissatisfaction is the symptom of an eating disorder, and that’s what we see young people present with. The starvation cycle can reinforce those symptoms because once you’ve dropped weight and your body and brain are starved, your preoccupation with body weight and shape increases. Once you enter the starvation process, your frontal lobes – where all the thinking, reasoning and rationalising happens – become impaired. So, we have cognition distortions happening whereby young people will look in the mirror and see themselves as bigger.
“The cruelty of the illness is that young people do lose weight, but they see themselves as bigger, which fuels their desire to continue to lose weight. The more weight they lose and the more starved they become, the more likely they are to see themselves as bigger. The pain or trauma manifests itself in the form of a struggle with the body and creates a disconnect from the body and a disconnect emotionally, which then perpetuates symptoms of isolation. The rejection of food is almost like a rejection of a certain way of being. Food is such an integral part of our lives, and our bodies are such an integral part of our lives, and I think disconnecting from them represents a huge pain.”
Chapter 5 in What Does Eating Disorder Recovery Look Like? is called ‘Is recovery possible?’. It’s interesting that you have chosen to explore the concept of recovery. Why did you do that?
“We did this because it felt hopeful. I think sometimes families who are in this process experience feelings of being stuck and powerless that are so strong that recovery feels impossible. Sometimes, as the therapist in the room, you are the voice of hope that this situation can be different when everyone else fears this will never change.”
How do you see the role of therapy in recovery?
“I think therapy’s role is to create a space for the young person to express how they might be feeling about their recovery and the things they’re finding hard. I think it’s about building a collaborative alliance with a young person that can hopefully override the connection they feel with the eating disorder. It’s about presenting an alternative perspective to how they are thinking about things, and to voice an alternative way of being. I also think it’s about engagement in a safe place, being a safe person and understanding even when it doesn’t make sense and for that to be OK in the therapy room. The role of therapy is to have a supportive, compassionate focus.”
In the afterword of the book, you both share your personal stories about why you became a clinical psychologist. Why was it important to you to do that?
“Lucia and I both felt we wanted to share our stories to give something back to people who have been very generous in terms of sharing with us. That’s not just the people who shared their experiences with us for the book, but also the patients we work with. These young people allow us into their worlds during a very difficult time in their lives, and they trust us, in the hope that talking to us will help.
“We also wanted to engage the audience in our own personal motivations as to why we do what we do, and for them to have some insight into what we’re about as clinicians and people. Being a therapist is a position of responsibility and privilege. People reach out to you all the time, they trust you to work with their children, and then the child trusts you. We’ve always felt very privileged to be let into people’s lives, so we wanted to share some aspects of ourselves as a way of saying thank you.”
What Does Eating Disorder Recovery Look Like? Answers to Your Questions about Therapy and Recovery is available to buy now.