Eating Disorder Support Groups: What are the Benefits & Downsides?
Groups (e.g., support, therapy, process, or book groups; online forum/discussion board, or any other kind of community support) have long been part of all levels of eating disorder treatment. Ubiquity doesn't equal effectiveness, however. In this blog post, I’ll discuss the benefits and downsides of eating disorder groups as well as things to consider when deciding if a group is right for you.
Disappointingly Few Research Studies
There are so many eating disorder groups and forums (especially in the post-COVID era), yet there’s so little published information about how effective or beneficial groups are short and long-term.
In looking at the scientific literature, I was dismayed by the general lack of research on eating disorder treatment approaches. I was also underwhelmed by the lack of research studies and by the quality of the research on peer or professional-led groups. There are several reasons for the lack of research studies and/or a lack of quality research on eating disorder groups:
There are many different types of groups, led by different groups of people, in a variety of settings, for different lengths of time, with a variety of outcomes. It’s difficult to compare the effectiveness of groups when they’re all so different. This means that we can’t make any conclusions about how effective groups are!
Most of the studies have small sample sizes and homogenous groups. For instance, if the researchers studied peer support groups for female-identifying adolescents with ARFID in the US, we can’t conclude that the same type of peer support group would be feasible or effective for individuals of different age ranges, diagnoses, genders, or who live in different geographical areas.
There’s a general lack of funding for eating disorder research as funding priorities are set by the institutions like the National Institutes for Health. Little funding = little research.
As I said above, ubiquity doesn’t equal effectiveness, and I’ll add that a lack of research doesn’t equal a lack of effectiveness either! It’s unfortunate that there’s not more evidence to support the effectiveness of eating disorder groups at the moment.
ED Groups- Benefits vs. Downsides
Let's look some benefits and downsides to groups. I drew these from the available research, client experiences, and my personal experiences participating in groups.
Some of the benefits of groups are:
Fostering a sense of connection in a "safe" environment.
Feeling seen and understood by others who live with eating disorders.
Inspiring hope & increasing self-efficacy.
Support in navigating challenges in recovery.
Positive role-modeling.
Can be more cost effective if 1:1 treatment or treatment in a facility isn't an option.
The number one most cited benefit of eating disorder groups is the sense of connection and feeling that “I’m not alone.” There can be tremendous benefits in giving and receiving support from a group of people who have similar(ish) experiences to you.
On the other hand, there are some downsides and risks to consider:
Connecting with other people with the shared identity of an eating disorder can lead to overidentification with your diagnosis.
Connecting over shared suffering can lead to competition and demoralization. I call this the “Olympics of Suffering”- you don’t get a medal for suffering the most. Sometimes it can be difficult to make progress when those around you are struggling, especially if you internalize their struggle.
Discussion topics (even when moderated by a professional) can activate emotional reactions and nervous system responses which can increase eating disorder symptoms.
The feeling of obligation to help other group members even when it hinders your own progress.
Censorship or self-censorship during group experiences. Guidelines, while necessary to maintain safety during groups, can limit free expression of experiences.
Just because a group is low cost or fee doesn't mean that it's a helpful or effective treatment
A major downside to eating disorder groups is the risk of overidentifying with your diagnosis and having it subsume your identity. Spending a majority of your time in recovery communities can be overwhelming to your nervous system. It’s also easy to fall into the trap of being there for others even when it’s detrimental and harmful to your personal progress. It can be a tough line to tread.
Is a Group Right for Me?
How do you know if a group is "right" for you?? Here's a list of things to consider (come back to this when necessary!!):
What is the purpose of me joining this group? Does my purpose align with the description of the group? If not, what other types of groups would be helpful for me? Connecting with others can be beneficial. It’s worth asking yourself whether connecting over a mental health issue is the best option for you.
What do I hope to gain from participating in this group? How does this align with the stated outcome of the group experience?
Who is leading the group, and what are their credentials? Do they have experience leading groups and what kind of education/training do they have in leading groups? Degrees and clinical experience don’t always translate into the ability to lead groups!!
How large is the group and what is the demographic composition of the group? What shared identities will I have with other participants?
What are the guidelines of the group? How does the group leader plan to set and enforce boundaries and guidelines around discussion topics, numbers, etc.? What are the benefits and downsides of censorship or self-censorship?
What is my plan if I experience an emotional reaction or nervous system activation during or after a group experience? What support do I have in place and what coping skills will I use?
What boundaries will I set and enforce for myself in being there for or helping other group members? If I notice that my progress in recovery is being hindered because I'm helping others, what will I do?
What is my plan if I notice an increase in the frequency or severity of my eating disorder behaviors? Who will I contact for support?
When I decide to move on from the group, how will I handle leaving and any changes in any friendships I've made?
It’s always okay (and advisable) to contact the group leader for more information about the group. Make sure that you get all of your questions answered. If a leader doesn’t have the time or interest in answering your questions, it’s usually a red flag.
Photo by All Go- An App for Plus Size People (@canweallgo) via Unsplash