A Seat at the Table: Understanding and Helping the Siblings of Eating Disorder Patients

I feel honored to serve on the Professional Advisory Panel for FEAST, a nonprofit organization which provides support and information to the parents and families of people with eating disorders. Last weekend, I had the privilege of presenting at the second annual FEAST conference in Alexandria, VA. I spoke to a group of parents about understanding and helping their other children while also caring for their eating disordered child. Below are some of the major points from my presentation.

Eating disorders can impact the patient’s siblings from various angles:

• Through their parents. When a child is ill with an eating disorder, her siblings often receive less attention from their parents. The parents may be physically absent from the home, traveling to faraway treatment centers and attending many different appointments locally. Parents often feel worried, stressed, and irritable, and these emotions can easily spill over into their relationships with their other children.

• By impacting family life. Family meals with an eating disordered person can be tense or explosive. For this reason, siblings may begin to dread family meals or avoid them altogether. Family trips may be cancelled or ruined by the eating disorder. The financial burden of ED treatment impacts the entire family, including siblings.

• Through their social environment. Parents may not be available to drive siblings to their lessons, sports events, and social activities when they are spending long hours preparing and supervising meals and driving the ill sibling to appointments. Siblings may feel embarrassed to invite friends over when their ill sister or brother is acting particularly bizarre. Siblings may have to deal with gossip from friends and neighbors. They may feel conflicted about telling their friends about their family’s situation, and they have to deal with the stigma of mental illness.

• Through the change in eating habits. Parents are encouraged to serve their anorexic children high-calorie foods to restore their weight. Sometimes siblings over-indulge in these foods and gain unneeded weight.

• Through their genes. Biological siblings of eating disorder patients are 10 times more likely to develop an eating disorder compared to the general population. Additionally, siblings of eating disorder patients may inherit genes that predispose them to other psychiatric illnesses, including depression, OCD and other anxiety disorders, substance abuse, ADHD, and autism.

Brothers and sisters may experience a variety of emotions while their sibling is ill with an eating disorder. They may worry that their sibling will get sicker or die. They may grieve for the loss of their sibling’s true personality while she is consumed by the illness, and they may miss her terribly if she is away from home for a lengthy hospitalization or residential treatment stay. They may worry about their own risk for developing an eating disorder. They may feel angry at their sibling for putting the family through hell or making mealtimes miserable. They may feel jealous because of all of the attention their ill sibling is getting. Siblings may react by withdrawing from friends and family members, having difficulty at school, or acting out. They may feel sad or hopeless. They may have difficulty concentrating. Very young siblings may manifest their distress through physical symptoms (e.g., tummy aches, trouble sleeping).

It may not be possible for parents to shield siblings completely from the impact of the eating disorder. However, there are some steps that parents can take to minimize the damage and help siblings cope:

• Immediately upon diagnosis, provide siblings with age-appropriate information on their sibling’s diagnosis, symptoms, and treatment. Explain that the disorder is biologically-based and that the child did not chose to have it. I have a Sibling reading list, as well as a list of Q & A for siblings of AN patients. Even preschool-age siblings can understand a few basic points: “Your sister has a disease in her brain called anorexia which has made her very sick. She is acting different because of her sick brain; it is not her fault. We need to help her get better. Mommy and Daddy will be very busy taking care of her, but we still love you very much.”

• Be frank with siblings about the seriousness of the eating disorder, including the possibility of death. This honesty helps siblings understand why it is so important that the family intervenes immediately and aggressively, and why other activities have to take a back seat for now.

• Be honest with siblings about the reality of dealing with the eating disorder. Acknowledge that, for a period of time, the whole family will be under stress, family life will change, and you may not be able to spend as much time with them.

• Bring siblings to some Family-Based Treatment (FBT) sessions so that the therapist can explain the eating disorder to them, describe the treatment process, answer their questions, and tell them how they can support their ill sister or brother.

• Make a point of scheduling one-on-one time with each sibling and talking with them about their lives apart from the eating disorder.

• Talk with siblings about their feelings and reactions to the eating disorder. Let them know that it is totally normal and understandable for siblings to feel worried, angry, jealous, resentful, or sad in this type of situation.

• Ensure that siblings remain in a support role, rather than taking on a parent’s role. Lock and LeGrange, authors of the FBT manual, call this process “maintaining intergenerational boundaries.” Siblings can help their ill sister by providing her with distraction before, during, and after meals, by being good listeners and providing empathy, and by engaging her in normal sibling activities. Siblings can help by taking over kitchen chores that the eating disordered person is not well enough to do, such as setting the table or doing the dishes. Do not involve siblings in the actual process of re-feeding or supervising meals, as this can put them in a delicate position of being torn between “loyalty” to their ill sister and the responsibility of reporting ED behaviors to their parents.

An eating disorder can also impact siblings in a positive way. For example, they may grow closer to their ill sibling and value her more after almost losing her. They may feel needed and important in the process of supporting their ill sister or brother. Siblings may become more aware of EDs and other psychiatric illnesses in their friends and try to intervene whenever they see concerning behaviors. They may have improved body image after witnessing the disturbing body image distress of their ill sibling. Often, siblings benefit from having more frequent family meals and structured eating habits. They may grow and mature from the experience, developing more autonomy when parents’ focus is on the eating disorder treatment. Siblings benefit from strengthened parental unity. If a sibling develops an eating disorder or another illness in the future, their parents tend to intervene immediately and are much more equipped to deal with it.