The experiences of siblings of individuals with eating disorders has received relatively little space in the academic literature to date. Several studies have revealed the disruptions in family life that can occur when a child has an eating disorder (for example, see Hillege, Beale & McMaster, 2005 and Perkins et al., 2004). On the other hand, some studies have shown that siblings of patients with chronic illnesses have both positive (personal growth, responsibility, increased empathy) as well as negative (worry, fear, resentment) experiences.
However, few studies have explored experiences of male siblings, older siblings, or siblings of adolescents with eating disorder not otherwise specified (EDNOS). Consequently, to help fill this gap, Areemit, Katzman, Pinhas & Kaufman (2010) conducted a mixed-methods study looking at experiences and quality of life among siblings of adolescents with eating disorders.
Twenty siblings were recruited from The Hospital for Sick Children in Toronto. All lived with their ill sibling (hereafter AED for “adolescent with an eating disorder”, as they were called in the study), who had been diagnosed at least 3 months prior, were between the ages of 10-18, and had a family doctor. The mean age of the siblings was 13.5, with 10 and 16 being the youngest and oldest ages, respectively. There was a mix of older, younger, and twin siblings, with 30% brothers and 70% sisters. The majority (70%) of AEDs were diagnosed with anorexia nervosa and the remaining 30% with EDNOS.
Siblings completed a number of self-report questionnaires aimed to gauge their quality of life (Pediatric Quality of Life Inventory 4.0 Generic Core Scales), their experiences in general (General Assessment Questionnaire), and their eating attitudes/screen for an eating disorder (Eating Attitudes Test). Additionally, siblings who wanted to continue with the research were invited to participate in a focus group; 10 siblings participated in this group.
The authors used Corbin & Strauss’s (1990) grounded theory for qualitative analysis and checked their results with some of the siblings.
WHAT DID THEY FIND?
The quantitative data revealed relatively little; keep in mind that 20 is a very small sample size" data-definition="explanatory-dictionary-definition-364">sample size for a quantitative study, and allows for only weak and tentative conclusions. Nonetheless, the descriptive statistics the authors calculated (the majority of which I described above) makes interpretation of the qualitative results quite interesting.
In terms of questionnaire results, the authors noted that 80% of siblings reported a decline in quality of life. However, none of the siblings met the quality of life survey’s cut-off point for “risk of impaired quality of life.” It is likely that more interesting and assertive quantitative results would have emerged if the authors had used a larger sample.
Overall, the siblings described their lives in conflicted ways. The key themes reflect the duality in their lives:
1. Struggling to understand the ED
Siblings were not always given information about their sibling’s eating disorder and reported feelings of confusion, anger, and frustration. They reported different understandings of eating disorder etiology, sometimes fluctuating between feeling as though the sibling wanted attention and at the same time seeing the eating disorder as something over which the AED had no control. For example, one sibling said:
Yeah it’s like, when people are saying ‘what is wrong with those people; why don’t they just control it’, you feel kind of defensive but you’re thinking the same thing.
2. Acute awareness of ED behaviours and thoughts
Among the changes in siblings’ lives was the development of a greater awareness of eating attitudes and behaviours surrounding them. Though siblings did not see (or admit to) changes in their own eating overall, some reported having “experimented” with the AED’s eating behaviours. They also noted being more sensitized to the social context surrounding food, dieting and fat talk (from the AED or others).
One sibling commented:
I never lend her any of my clothes any more because she’ll say, ‘I couldn’t wear the clothes because it was too big for me, it was just too big for me’. I’ll be like, okay, ‘You don’t need to tell me that three times. Yes, I’m bigger than you’.
3. Challenges in understanding non-eating related obsessive behaviours
Interestingly, and related to the first theme, siblings struggled most to understand behaviours that were not related to food. Behaviours that seemed to stem from comorbid conditions (e.g. obsessive-compulsive disorder) made siblings feel more alienated, as they did not seem to be clearly linked to the eating disorder.
4. Increase in family conflicts and arguments
Family conflicts, both between parents, and between the AED and various members of the family, were noted to have increased, according to siblings. They suggested that these fights often centered on negotiation, lies, and secrecy, and they seemed unfair to them. In conflict situations, siblings also felt torn between loyalty to parents and to their sibling. Participants also reported being fearful of fights breaking out over meal times. However, despite this increased familial conflict, some siblings also talked about the eating disorder having brought the family closer together.
5. Compassion and concern for the AED
Worry and concern for the AED were common among siblings; many feared for their sibling’s life and long-term health. This was also coupled with a desire to safeguard the AED from the judgment of less compassionate others. For example, one sibling noted:
It’s so easy for people to say ‘[you should] try not to think about it, but you can’t not think about it. How can you not think about it when someone who you love is just suffering?
6. Feelings of loss and sacrifice
Despite their compassionate outlook, siblings also described losses, such as loss of personal identity, closeness with the AED, and a “normal childhood.” This was sometimes articulated in terms of appearing (or fearing that they might appear) to be just the sibling of a person with an eating disorder. This led some to isolate and become more private, or to take on the identity of “the undemanding, silent child.” The process of shifting identity was not uniformly negative, however, with some siblings noting positive changes, particularly the development of better self-understanding.
7. Overwhelming sense of responsibility for the AED
Siblings’ sense of responsibility for the eating disorder seemed to differ by age. The authors note that older siblings reflected on things they might have done that could have contributed, whereas younger siblings feared doing the “wrong thing” in the future. For example, one sibling said:
Sometimes I blurt something out by accident, not knowing what it means, without thinking it straight, and then she gets the wrong idea. So, sometimes I feel like it’s something I did wrong.
I’ve always been like that; I’m responsible for everything. I always thought back to all the things that I ever said (snifﬂing) ‘am I like a bad sister?’ Which I know I have been a good sister but (crying), I blamed myself for that. I don’t know, I just thought ‘what did I say?’ or ‘what did I do that made her feel she wasn’t good enough?’. Maybe I should not have said, ‘those pants are too small’.
Again, the issue of mixed loyalty resurfaced, as siblings were unsure whether to report to their parents when they saw the AED engaging in eating disordered behaviours. Many felt that they should help in managing their sibling’s ED, for example through supervising mealtime.
8. Pervasiveness of the ED in all aspects of the siblings’ life
The eating disorder impacted siblings’ lives in a number of different ways, and in different areas of their lives. Siblings reported adapting to these changes and integrating the differences into their lives by taking on new roles and/or responsibilities.
Overall, this study highlights how eating disorders can come to have huge impacts on siblings, as well as families in general. While I wouldn’t call this a unique finding in the vast eating disorder literature, the particular experiences described by siblings help to shed some light on areas in which interventions or support might be most useful. Based on the qualitative results, providing siblings with information and support that would help them to navigate the at-times confusing experience of living with an individual could be a helpful approach.
Of course, more research is needed to increase the generalizability of these findings. As the authors note, the sample included in this study all elected to participate and the focus group participants were particularly eager to share their experiences. Finding a way to include siblings who felt more disengaged would be extremely interesting in terms of reaching the voices that are harder to hear. Some larger studies in the quantitative realm might also illuminate potential differences in experience between genders, older and younger siblings, and siblings in different types of households.
Searching for the anecdotal, I’m curious: Have any readers talked to their siblings about their experiences? My own brother is a closed book and we also lived separately for much of the time I was actively symptomatic so I still have no idea, unfortunately, what it was like for him to have a sister with an eating disorder.