by Sinead Crowley
This article aims to explore the experience of stakeholders, from the perspective of both the clients and the clinicians involved in the treatment of complex eating disorders, with a particular focus on young people with anorexia nervosa. The title Tolerance of uncertainty was chosen in order to reflect the experience of all the stakeholders involved in the treatment of a young person with anorexia nervosa. The stakeholders include the clinicians and agencies involved in the care of the young person, their parents and siblings, and in particular the young person themselves. For young people with anorexia nervosa, tolerance of uncertainty would involve letting go of the eating disorder and experiencing the myriad of intense emotions they desperately want to avoid. In many ways the eating disorder serves the purpose of helping clients stave off the big feelings that they hold within them. As a psychotherapist working with young people with eating disorders, I will also explore my experience in trying to establish and maintain a holding and containing psychotherapeutic relationship with young people within a multi-disciplinary treatment team.
It is an intrinsic human need to be met as a person and for the young person to be seen and connected with, beyond just their eating disorder. This can be challenging when working within a medical model and where there may be physical complications and risks for the client as a result of their eating disorder. These risks may overshadow the person within. Anorexia nervosa has the highest mortality rate of all psychiatric disorders and as a result can cause significant anxiety for all stakeholders involved (Nicholls & Barrett, 2015; Nicholson, 2013).
The plate spinner
Plate spinning is precarious; involving the need to keep an eye on multiple events at the one time and working hard to keep all the components afloat. The precariousness and the anxiety evoked in plate spinning, in many ways, mirrors the emotional uncertainty and risks involved for the client with anorexia nervosa and the anxiety of the stakeholders involved in their treatment. Eating disorders evoke significant anxiety for the family and for the clinicians trying to support the young person. At the forefront of everyone’s mind is that a person may die as a result of their eating disorder.
As the psychotherapist you aim to meet the person as a whole and provide clients with a holding and containing space; calling them into a therapeutic relationship which offers a calm, attuned space in the tumult. As the therapist you are trying to support a young person to take a risk by letting go of their eating disorder.
A young person may often experience their eating disorder as the only thing that helps them stay afloat and tolerate their experiences. Recovering from an eating disorder requires facing uncertainty, trying new things and building new relationships (Sternheim, Fisher, Harrison & Watling, 2017). As a psychotherapist working from a person-centred, humanistic approach, the aim is to meet and accept the whole person and give them an opportunity to be seen beyond their eating disorder presentation, and to create a safe enough space to facilitate the expression of feelings. The therapist needs to build a therapeutic alliance that facilitates safety and trust, to allow the tentative steps of reconnecting with themselves and moving towards recovery. This can be a slow process, as the young person may find it difficult to trust and often presents with a fragile sense of self. Where the eating disorder is a long-established condition they often cannot remember a time and sense of themselves prior to the eating disorder. At times their sense of self feels like grains of sand slipping through their hands.
Golan, Yaroslavski and Stein (2009) highlight that the management of eating disorders goes beyond symptom reduction and moves towards reinforcing opportunities for the client to develop new ways of thinking, feeling, and acting. For this to happen the treatment environment needs to act as a holding and containing environment, in which the young person can begin to experience a therapeutic alliance and explore their experiences and emotions. Studies show that people with eating disorders do not tolerate uncertainty about the future well and that uncertainty makes them feel anxious (Sternheim et al., 2017). Intolerance of uncertainty can be defined as a tendency to react negatively on an emotional, cognitive and behavioural level to uncertain situations and events (Sternheim et al., 2017).
Intolerance of uncertainty is often mirrored by the treatment team in the knowledge that eating disorders have the highest mortality rate of all mental health disorders (Nicholls & Barrett, 2015). Clinicians’ previous experiences of working with complex eating disorders can influence what they bring to the presenting case. The fact that in Ireland today there are no public specialist eating disorder units for young people creates added complexity and anxiety for everyone. Currently within the Irish jurisdiction, if a young person needs the intervention of tube feeding, they are transferred to a paediatric acute hospital for medical stabilisation and/or re-feeding. Where they have acute needs they may be transferred to a specialist eating disorder service within another jurisdiction, such as specialist eating disorder units in the United Kingdom. While there are dedicated child and adolescent inpatient units in Ireland, there is currently no specialist inpatient or outpatient eating disorder service. This gap has been identified and specialist teams and services are being developed under the HSE (2018) National Clinical Programme for Eating Disorders.
Given the complexity of eating disorders, an interdisciplinary approach is recommended (Lask & Byrant-Waugh, 2013). This may involve paediatrics, community mental health services, inpatient units, schools, child welfare agencies, family members and also young people with eating disorders. Working as part of an interagency team requires the psychotherapist to try to establish, hold on to and protect the therapeutic relationship without getting entwined in the anxieties of a system that is also working hard to treat the young person. The medical model is often perceived as having a paternalist way of doing things and is required to consider issues such as physical complications experienced by the young person, as a result of starvation. There is also a sense of urgency within the medical system and time pressure to make, and be perceived as making, progress.
According to Manley and Becker (2005), it is widely recognised that a good therapeutic relationship is needed for a healthcare professional to work effectively with a young person with an eating disorder. The nature of an eating disorder is such that it lends certain intensity to the relationship with the client and relationship ruptures can easily occur. Manley and Becker (2005) identify that difficulties around themes of trust, hope, benevolence, and abandonment can be common. Fight and flight response to the taking away of their control around eating can be a common response and may manifest through self-harming behaviour.
The strength and courage needed by a young person to challenge their anorexic thinking cannot be underestimated. What may support the young person to take the courageous step to re-enter the world may be the subsequent experience of being seen and met with kindness and respect by all members of the team working with them. By consistently meeting a young person in this fashion and working at their pace, a sense of safety and trust can be established that allows them to re-emerge and take the anxiety-provoking first steps towards recovery.
Golan et al. (2009) suggest the aim is to encourage the client to engage in treatment not as a form of compliance, but as a meaningful genuine developmental process. The establishment of a relationship between all involved can be understood in terms of Winnicott’s mother- infant holding environment (Winnicott, 1969). Golan et al. (2009) suggest that by re- experiencing events in the therapeutic environment, the client’s needs may be resolved by the therapist’s wish and ability to foster a good enough holding state.
Impact on the therapeutic alliance
Due to medical complications resulting from their eating disorder, the treatment team may be required to transfer a client to inpatient care or to an acute hospital setting. The therapeutic process takes time and does not always progress at the pace needed, in terms of weight gain and reduction of the physical risks associated with low body mass index (BMI). The transfer of a young person’s care to another service or agency can lead to a termination of the therapeutic relationship. These decisions can leave both the therapist and the client feeling disempowered and unheard as often progress is being made within the therapeutic work, with the young person exploring a sense of themselves and contemplating recovery and a different way of being. In these situations, there may not be time to prepare for the ending and it can be experienced as a sudden rupture for both the young person and the therapist.
As a psychotherapist working within the health care system, it can be very helpful to build relationships with the various agencies/services working with young people with eating disorders and to advocate about the importance of maintaining the therapeutic process and relationship alongside the immediate medical needs of the person. By disregarding the importance of the therapeutic alliance the young person may feel abandoned or that they are too much to bear. Often young people with eating disorders can present with a history of disrupted attachments in their familial relationships. When a client is transferred to another unit/service the early experience of rupture and disrupted attachment relationships is re- enacted by the treatment team. Safran and Muran (2006) note that the therapeutic alliance is not a static variable but is negotiated between the client and the therapist on an ongoing basis. This is often the case when re-establishing the therapeutic relationship after a young person has been transferred to another unit. Being linked with multiple services can also present as a challenge to forming a therapeutic alliance with the young person and their family.
Intolerance of uncertainty at its core represents a fear of the unknown. The anxiety evoked within the interagency treatment team can be palpable especially given that anorexia nervosa has the highest mortality rate of all mental health conditions (Nicholls & Barrett 2015; Nicholson 2013). This anxiety and fear of change and the unknown is often mirrored in the young person with the eating disorder. In many ways the eating disorder has served the purpose of helping the young person stave off the big feelings that they hold within them. The role of psychotherapy is to provide a containing space where the therapist meets the whole person and allows them to experience a congruent, non-judgemental relationship where they can begin to explore their sense of themselves, the role of their eating disorder and contemplate the journey to recovery. The therapist tolerates the uncertainty evoked by the illness and provides a space where the client can be met as a person.
Sinéad Crowley is a Humanistic and Integrative Psychotherapist with a specialism in play therapy. Sinéad has over 16 years’ experience working in the area of child and adolescent mental health.
Eating Disorder Services (2018). HSE Model of Care for Ireland: National Clinical Programme for Eating Disorders. Retrieved 31 August 18 from https://www.hse.ie/eng/services/list/4/ mental-health-services/national-clinical-programme-for-eating-disorders/ed-moc.pdf
Golan, M., Yaroslavski, M.D., & Stein, M.D. (2009). Managing eating disorders: Countertransference processes in the therapeutic milieu. International Journal of Child Health and Adolescent Health, 2:2
Lask, B., & Byrant-Waugh, R. (Eds.). (2013). Eating disorders in childhood and adolescence. London: Routledge.
Nicholls, D., & Barrett, E. (2015). Eating disorders in children and adolescents. The British Journal of Psychiatry, 21, 206-216.
Nicholson, J. (2013). Psychological assessment. In Lask, B., & Byrant-Waugh. (Eds.), Eating disorders in childhood and adolescence. London: Routledge
Manley, R.S., & Becker, E. (2005). No, I can’t be your…: Boundary issues for health care professionals. BC Medical Journal, 47(1), 41-43
Safran, J., & Muran, J. (2006). Has the concept of the therapeutic alliance outlived its usefulness? Psychotherapy: Theory, Research, Practice, Training, 3, 286-291.
Sternheim, L., Fisher, M., Harrison, A., & Watling, R. (2017). Predicting intolerance of uncertainty in individuals with eating disorder symptoms. Journal of Eating Disorders, 5, 26.
Winnicott, D.W. (1969). The use of an object. International Journal of Psychoanalysis, 50, 711-716