Social support has been noted as key in helping individuals with any number of health issues to cope with illness and even thrive in adverse situations (Sarason, Sarason & Pierce, 1990). Individuals with eating disorders may be encouraged, as an adjunct to treatment or even in the absence of formal treatment, to seek out social support to help with the day-to-day management of their disorder (Holt & Espelage, 2002). However, not everyone with an eating disorder seeks out social support; in fact, some may actively avoid seeking support during trying times. To find out more, Akey, Rintamaki & Kane (2012) examined social support seeking among men and women with eating disorders.
The authors interviewed 34 men and women, aged 18-53 (mean age 25) diagnosed with eating disorders and used grounded theory methodology (Glaser & Strauss, 1967) to analyze their data. As explained in a prior post, grounded theory is a qualitative methodology that uses participants’ accounts to develop practical theories that apply to particular situations or phenomena.
Analysis was framed in a popular health behaviour theory, Health Belief Model (HBM; Rosenstock, 1966, revised by Janz & Becker, 1984). According to HBM, people enact health behaviours (in this case, seeking social support) based on 5 key factors:
- Perceived susceptibility to a health threat
- Perceived severity of a health threat
- Perceived benefits of engaging in protective behaviours
- Perceived self-efficacy of using protective behaviours
- Perceived barriers to enacting protective behaviours
In this study, the “health threat” is the eating disorder and related complications, and the protective behaviour is seeking social support. This theory has been widely used in health promotion contexts, however, this was one of the first times I have seen it linked to social support, which intrigued me. On the one hand, I am encouraged by social support being seen as a health protective behaviour; on the other, I am always hesitant to try to make things fit into neat little health model boxes. Nevertheless, I was intrigued enough to learn more.
WHAT DID THEY FIND?
Susceptibility
Authors report that in their sample, individuals’ perceived susceptibility was linked to whether they were in denial of the eating disorder and/or it’s severity, as one might predict. This means that when individuals are actively denying their eating disorder, they might be less inclined to seek social support, as it would not seem necessary.
Severity
If an individual with an eating disorder sees their eating disorder as “less severe,” for example in comparison to others’ disorders, they were unlikely to enlist social support. The comparison aspect struck me as the most interesting element of this finding; it would seem that participants evaluated severity based on comparison with real or imagined others with eating disorders:
For instance, Derek explained, ‘‘It’s nothing too serious to me. I’m not like, ‘oh my god, I might have a heart attack tomorrow.’’’ Similarly, Joanne remarked, ‘‘I know I have the problem, but I don’t see it as severe.’’ sometimes this minimal sense of severity was a result of comparing one’s self to others. Joanne continued by explaining, ‘‘You always see someone else’s problems way worse than yours.’’
Perceived Benefits
Participants discussed reservations about the support they might receive in terms of its quality and effectiveness. Notably, some of these reservations stemmed from past encounters with ineffective support, for example if a family member had been in denial about the disorder or refused to acknowledge it:
Ryma, who explained, ‘‘in the past (my family) were in denial, they didn’t believe I had a problem.’’ For some, this concern stemmed from the fact that their symptoms did not present with exaggerated weight loss or diminutive body mass. […] Simon presented with an additional concern that being a man would further impair people’s ability to recognize his eating disorder. […] Friends and family likely lacked the requisite knowledge to provide meaningful and effective support, leaving them unable to know what to do or say to be of assistance.
In situations where others might be willing to offer support, some participants were hesitant to seek their support for fear of obtaining unhelpful or even detrimental help, concerns that surfaced even when participants discussed the possibility of seeking professional help. Again, past experiences with negative “support” coloured participants’ views about the effectiveness of support, should they seek it.
Mary explained how previous clinicians with whom she worked did not address the psychological component to her eating disorder, instead offering her medications, which fell short of her expectations and left her disheartened about clinical interventions.
Perceived Barriers
Barriers to support revealed in this study included a lack of access to sources of support both formal and informal. Stigma also inhibited support seeking, as participants feared significant others in their lives coming to see them in a different (negative) light if they revealed their illness and asked for help. Fears of being dismissed also surfaced, and similarly to the results for “perceived barriers” were largely based on past experiences:
For instance, Azita described her sister’s antagonism towards her for having an eating disorder, as well as how she publicly denounced those struggling with the disease: “She has made it really hard, because she will openly say that she doesn’t think it should be covered by insurance and doesn’t think it’s a problem.She says that it is just a matter of will power and I should just get over it.”
Finally, participants often refrained from seeking support as they didn’t want their loved ones to feel distressed. The authors describe this as putting others’ needs above their own.
Self-efficacy
Finally, participants expressed that they often felt unable to ask for what they need and were fearful of losing control over information related to their eating disorder. This inability to articulate what kind of help is desired, coupled with the fear of stigma or loss of control, led participants to isolate themselves instead of seeking support.
Still other participants chose to self-isolate and remove themselves from their social circles, which also impaired their ability to seek support. Ann provided a clear illustration of this strategy […]: I stopped myself from going to activities. I talk myself into the fact that I don’t deserve to be with people. I seclude myself a lot of times and I isolate myself. They say that isn’t good, but I think that in the case of my nephews and my niece, I’m isolating myself from them because I don’t wanna be a negative impact on them.
IMPLICATIONS
Examining eating disorder management outside of the clinical environment holds important implications, as not everyone with an eating disorder seeks or obtains medical care. As the authors suggest, social support likely plays an important role in coping with an eating disorder.
However, I found myself asking what this study revealed that we don’t already know about eating disorders. HBM is often used because it is relatively intuitive; it makes sense that its various dimensions would play into an individual’s decision-making process surrounding health behaviours. Sometimes I felt as though the participants’ responses were being fit to this model in a less-than-organic way, however, which had me questioning the “groundedness” of the conclusions.
To me, the most interesting thing about these findings is the way in which prior interactions with potential support-providers (e.g. a significant other or a parent) affects future decisions to seek support. This underscores the importance of providing families, friends, health care professionals and society in general with better information about eating disorders.
I think the onus lies less with the people seeking support (i.e. those with eating disorders) and more with the givers of support; of course one would be hesitant to reach out for support, no matter how much they might want to, if they are faced with dismissal or unhelpful responses.
The importance of making attempts to decrease stigma and shame around eating disorders emerges once again as a key factor in enabling individuals with eating disorders to feel more comfortable seeking formal and informal sources of support. Of course, this is easier said than done, but that’s another story entirely…
References
Akey, J.E., Rintamaki, L.S., & Kane, T.L. (2013). Health Belief Model deterrents of social support seeking among people coping with eating disorders. Journal of Affective Disorders, 145 (2), 246-52 PMID: 22840616
In seeking social support do you mean simply ‘telling people,’ asking your friends and family for help? I had bulimia twenty-plus years ago. I was amazed, when I told people, how many of those women said that they had the same condition. Apart from the sense of not being alone in this, I didn’t find that disclosure helped me to get better at all.
Good question- I believe the authors meant actively seeking help, not just telling people; I guess it would depend on what the person wanted in terms of support, though. It could be that telling someone is in and of itself support seeking, if something one is struggling with is feeling isolated and unable to talk about the disorder. But you’re right; just telling someone doesn’t necessarily mean getting better. The support someone seeks could take a number of forms, for example someone to sit with you after a meal to prevent a purge or someone to provide some kind of distraction if you’re feeling urgey- to me those kinds of support seem more instrumental in terms of promoting symptom-stopping.
Seeking social support can be beneficial and at some point will be necessary to break the isolation and secrecy that are commonly associated with EDs. However, as noted, it can be a minefield. I started off with high family and friend support, isolated my friends and wore my family out; the sense is, quite frankly, that they are “over” the ED (and I should be too).
One area that often fills that void for people with EDs is online support: moderated pro-recovery forums where they can be “anonymously” honest and be understood and supported, yet challenged and offered ideas for emotion regulation, distress management, coping ahead with difficult situations, managing meal plans, and so forth. Reputable forums do not take the place of real life support, nor offer medical or therapeutic advice, but the real day-to-day skills that we have to learn and practice to get to the next point of recovery.
Aside from helping people to cope or manage while ill, are there studies that show a correlation between degree of social support and rate of recovery (or duration of illness perhaps)? In addition to all the barriers mentioned by the participants, it seems unlikely that adults, on average, receive the sort of support / care advocated in manuals for parents of adolescents with eating disorders that has been shown to aid recovery. They are more likely, for example, to live alone, have their own caring responsibilities, or not want a partner/close friend to take on a caring role. I guess I’m assuming (pessimistically?) that social support is unlikely to reach a threshold where it is actually a significant factor in ED recovery for adults, even if it is protective of health / does help with coping.
Great question. There are quite a few studies looking at social support during the recovery process, I believe, and a relatively strong body of literature looking at how to bolster social support for caregivers (with the idea that these individuals would then be better able to help their loved ones if they themselves felt supported). But, to my knowledge (and like you say) social support studies tend to focus on adolescents and the caregivers of adolescents- perhaps because it is easier (usually) to determine who would be “caregiving” or providing social support for adolescents. Things get a bit messier where social support for adults is concerned. The fact that adults may also find themselves in a caregiver role is for sure a complicating factor- I wrote about the experiences of mothers with eating disorders here: https://scienceofeds.org/2013/12/03/complex-motherhood-the-perspectives-of-mothers-with-eating-disorders/ though the focus wasn’t as much on social support per se. I took a quick look to see whether there were correlations between rate of recovery and social support for adults and found a qualitative study looking at how recovered individuals perceived the support they had received (http://www.ncbi.nlm.nih.gov/pubmed/22519898); it looks quite interesting though I haven’t yet read it in full- I’d be happy to blog about it if that seems interesting! There may be quantitative correlational studies associating rate of recovery with social support that I am unaware of.