Caring for a loved one with an eating disorder can be very challenging for families. Family members see their loved one struggling with major medical and emotional problems. They are often confused and frustrated because their loved one does not want to admit that they have a problem. When their loved one is ready to seek help, families often find there are long waiting lists and few resources for eating disorder programs in their community. Family members also face prejudice towards themselves and the person with the eating disorder due to lack of knowledge. Unfortunately, families are often directly or indirectly blamed for causing the eating disorder or questioned as to why they can’t “cure” their family member. Despite these many difficulties, family members are often surprised to find that their family relationships have been enriched and that they are brought closer to their loved one with whom they have overcome so many obstacles. This issue of the Bulletin will revisit the challenges faced by families caring for a loved one with an eating disorder. Strategies for assisting the person with the eating disorder and ways for finding support for the family will be suggested as well.
A typical family story
John and Stacey have a 21-year-old daughter who has been ill for eight years with anorexia nervosa. John and Stacey find their daughter’s weight loss, constant fears about gaining weight and refusal to eat meals with them very distressing. When they tell Nancy about their worries, they only end up arguing with her. Nancy’s younger brother and sister often feel that their needs are overlooked. The family feels that they are gripped by the eating disorder. When John and Stacey talk about their concerns with friends and extended family, they hear comments such as “Why can’t you just make her eat?” Or, “How could you let it get this bad?” Comments like these only make John and Stacey feel more hopeless and reluctant to share their concerns with others.
Expressing feelings
Sadly, this is a very common story in families of people with eating disorders. There are a number of strategies that may be helpful for coping with the challenges of caring for someone with an eating disorder. The first step is separating your feelings about the eating disorder from your family member. It is natural for family members to experience many feelings such as anger, frustration, sadness and hopelessness. These feelings are “normal” and expected reactions to the eating disorder. Families have a right to express their feelings and thoughts about how the eating disorder has affected them. However, there are some strategies for how to share your feelings with your loved one. People with eating disorders often feel ashamed and guilty about the problem and may even feel they are an enormous burden to their family.
It is helpful to recognize that the intense feelings are caused by the eating disorder itself and not the person. In other words, John or Stacey might say “I am so angry at this eating disorder that stops us from having meals together” rather than “I am so angry at you for not eating with us”.
Setting boundaries
Families have found it helpful to set a boundary around “eating disorder talk”. Tell your loved one that you would like to limit the influence that the eating disorder has on the family. For instance, Jane and her son Daniel agreed that they would only spend 15 minutes a day talking about the eating disorder and its effects. In the past, Daniel would repeatedly ask his mother, “Am I fat?” which would lead to frustration, since no matter what Jane said, Daniel still felt he was overweight. As the eating disorder talk is reduced, Jane and Daniel have more time to discuss Daniel’s interests, such as his love of art. This conversation improves Daniel’s self-esteem and helps him to feel more competent in an area independent of the eating disorder. This kind of discussion also helps Jane and Daniel develop a better relationship that is not just focused on the eating disorder. The whole family is able to resume activities and discussions that help them feel competent again. Once everyone realizes how pleasurable these other activities and discussions are, the eating disorder talk diminishes over time until it is silenced altogether.
Coping with ambivalence towards recovery
One of the core features of the eating disorder is ambivalence or “mixed feelings” towards weight gain and changing eating disorder behaviours such as vomiting and excessive exercise. Families find this ambivalence to be extremely frustrating and confusing. For example, John feels confused that his partner Alexa says she will get therapy one day while the next day she denies that she needs help. John tells Alexa that she must not “love him enough” since she doesn’t make an effort to commit to treatment. A point to keep in mind is that the ambivalence expressed by your loved one should not be taken personally. Alexa’s ambivalence about therapy does not reflect her feelings about John. People with eating disorders often have great difficulty changing behaviours that they see as positive. For example, Alexa purges in order to cope with stress at work. Encouraging the person afflicted with the eating disorder to identify the pros and cons of change may help you to gain a better understanding as to why they are ambivalent regarding change. Identifying what are seen as advantages to the eating disorder helps people to work together to identify strategies for positive change. Knowing that Alexa uses purging to relieve stress, John can begin to encourage Alexa to talk directly about her troubles at work and together they identified alternative ways of dealing with stress.
Self-care strategies
Family members of people with eating disorders often overlook their relationships with each other and forget to look after themselves. An analogy that I find helpful is that on flights passengers are always advised in emergencies to put on their own oxygen masks before helping a co-passenger. Similarly, family members of people with eating disorders should make sure that they look after their own physical, emotional, relational and spiritual needs. Otherwise, they will in the long-run find it more difficult to support others.
One strategy for improving self-care is to identify key people in your circle of family and friends who will listen without blame and judgment when you speak about your struggles. Surrounding yourself with supportive people will also help reduce the tendency that families often have of blaming themselves. Joining a group can also be very helpful. For example, you may benefit from being in a family support group, educational group or advocacy groups for families. Families who feel unsupported and judged by their own friends and extended family may find support groups particularly helpful in making them feel less alone as well as learning valuable coping strategies from people who have shared your struggles. Another invaluable resource is an advocacy group for families. Such groups typically focus on raising awareness about eating disorders and lobbying for better services and improved resources. It is every family’s right to have services for themselves and their loved one with an eating problem. Advocacy groups empower families by giving them an enhanced sense of control over the eating disorder and effective strategies for navigating the health care system.
Maintaining hope
Although the eating disorder can have a negative effect on families, there is also a great deal of hope. It takes tremendous courage and perseverance to live with the eating problem as it can have such terrible effects on both the family and your loved one. However, people with eating disorders do get better, although their paths to change may differ. Families too are able to grow and find strength as they help each other in battling the eating disorder. Although this article describes some strategies that may be useful, it is important to trust that you are the expert on this journey. It is important to honor what you have learned from this experience and to continue to use the constructive coping strategies that work best for you and your family. By trying various strategies, and joining support or advocacy groups, many families find that they can develop relationships that are no longer dictated by the eating disorder. Many families will come out of this experience to find that they are brought closer to their loved one. CS
National Eating Disorder Information Centre
200 Elizabeth St. 7ES-421
Toronto.ON. M5G 2C4 www.nedic.ca
