Eating disorders (ED) are serious mental health problems where mortality of one subtype, Anorexia Nervosa, is as high as 20% for those who experience it over a prolonged period. People do recover from EDs however, the recovery journey is not a linear process as it often takes the form of improvements interspersed with setbacks. Over the time it takes to recover, all aspects of the person’s life can be affected along with the lives of others who are close to them, including family members.
Family members’ experiences:
Most of what we know about the experiences of family members who are living with a person with an ED is from the perspective of parents. This is understandable given that EDs are most commonly associated with young people and the fact that many adults experiencing a long standing ED remain living in the family home. Living with a loved one experiencing an ED impacts on family members’ psychological, social and physical wellbeing, giving rise to many unmet needs. Family functioning as a whole is also impacted on, particularly where conflict exists around coping with and managing the ED behaviours and associated health risks.
Understanding parents’ experiences and unmet needs has been important for the development of appropriate interventions which can help them support the recovery of their loved one while improving their own wellbeing. However, interventions focused on supporting parents are not always appropriate for other family members such as partners, who might also be providing care to their loved one. As recent studies have found an increase in people of middle age presenting for treatment, many of whom are in an intimate relationship, a focus on understanding partners’ experiences is welcomed. This way partners too, can be provided with appropriate supports that will assist both themselves and their loved one in recovering from the distress of living with an ED. Findings from a recent research study presented below, goes some way to understanding what partners experience.
Regardless of the type of relationship between the family member and the person experiencing the ED such as partner, parent or sibling, family members commonly experience a disruption to their personal wellbeing. These disruptions apply to partners in the following way
- Psychological distress is experienced in the form of low mood, anxiety, poor sleep, stress and/or frustration, which initially arise from concern and worry for their loved one. This distress tends to increase over time and is more intense in times when an ED setback is occurring.
- Physical health is impacted on when partners adopt coping strategies to manage their distress such as overeating, increased alcohol intake or ignoring their own self care needs.
- Social connectedness diminishes over time as partners, in support of their loved one who is finding socialising more and more difficult, choose not to go out. In addition, partners also want to avoid having conversations with other people about the ED for several reasons;
- Their experiences suggest other people have little understanding of EDs and therefore it is difficult to talk about it.
- They do not want themselves or their loved one to to be judged by others, because of the ED
- Partners do not want to break the confidences of their loved one by discussing the ED with other people
The distinct and different experiences for partners, as opposed to other family members, is in the context of the intimate relationship, where there is change to the order and balance of the relationship that had previously been established by the couple.
- There are changes to their roles within the relationship, the primary one being that of becoming what most people would consider ‘a carer’. Although partners are more than willing to provide care and support for their loved one, sometimes this can become like a parent/child dyad rather than an intimate couple relationship. For example they may feel like a parent when they are trying to encourage the person to eat or when, through concern, become more watchful of their loved ones behaviours.
- Sexual intimacy diminishes particularly when their loved one is experiencing poor body image, low mood or low self-esteem.
- Communication and trust between the couple changes, particularly around the ED issues. This can be in the form of conflict where both people are finding it difficult to negotiate around the ED. Increased silence is also commonly experienced where, talking about the ED is difficult or a partner does not want their loved one to know how distressed they may be feeling.
What do partners do?
From the outset, similar to parents, partners desperately want to be able to help their loved one recover from the ED, which they believe will help their own recovery and recovery of the intimate relationship. However, particularly in the early stages of the ED when partners have little or no knowledge or understanding of it, they are at a loss as to how to help. Many partners express their fear of providing the wrong kind of help which they worry will only make things worse. In fact, this is a reality for many people who, when they look back on how they initially dealt with the problem such as getting angry at their loved one or not confronting the ED issues, they are left feeling guilty and distressed. But what are they to do when they are faced with such a devastating problem, have little information about it, don’t know how to manage it and have little support or help?
- Becoming informed about the ED is an initial and ongoing strategy which help partners develop an understanding of the ED, think about ways of supporting their loved one and identify options to access professional help.
- Translating this information into practical help and support for their loved one is the next logical step. However, this is very, very challenging, particularly when ED related conflict or silence is experienced in the relationship, when there is little support from others or there is poor access to professional help. Developing appropriate supportive strategies for their loved one tends to be a matter of ‘trial and error’. In this way over time partners begin to build on those strategies they find helpful while relinquishing the less helpful ones. However, what this means is, precious time is lost in the fight against the ED which in turn prolongs the recovery process for both the partner and their loved one.
- Developing a resilience against the ED disruptions to their lives is an important skill that partners begin to build on over time and is achieved by:
- Maintaining hope for recovery. This is not always easy to do particularly when their loved one experiences ED setbacks. Often partners need to reframe their hopes for recovery for example, hope that their loved one can have a better life even if living with ED setbacks.
- Working around the ED disruptions e.g. a meal out is planned in advance by checking the menu and going out with people they feel comfortable with.
- Availing of family, friends and professionals where possible to support them and their loved one through recovery.
- Acknowledging and responding to their own self-care needs. This usually takes quite some time to master however, as they tend to prioritise the needs of their loved one over their own needs. Becoming aware of their limitations regarding how they can support recovery coupled with handing over responsibility for recovery to their loved one, goes some way to facilitate partners to self-care.
…Pause for thought
How difficult it must be for a partner to be living with a loved one who is experiencing an ED. Not only is there worry for the health of the person but there is also a sense of loss as the ED impacts on the intimate relationship. Compounding their difficulties is the general lack of understanding regarding EDs which makes access to social support problematic. This coupled with the limited access to professional help can leave partners feeling very alone and lost in their fight for the recovery of their loved one, recovery of the intimate relationship and their own personal recovery.