Support groups have become much more available for eating disorder sufferers and their families. Most families can find a support group within a reasonable driving distance from their home and, of course, with technology exploding as it is, they are available on-line too. I am an advocate of support groups because I think that they are a very valuable addition to the care of the entire family. I am focusing my attention primarily on the groups for caregivers of eating disorder sufferers in this post.
These groups provide helpful information and resources for new families and even those who have been doing this for awhile. The latest research and treatment modalities are shared through these groups. Caregivers are able to share experiences with various treatment facilities and providers, feedback on success and failures with specific treatment modalities, anecdotes and tips, recipes, etc. They share tips for self-care and talk about managing their own stress as well. Support group members empathize with each other, pick each other up, and allow each other a safe place to vent their feelings. All of this is true of both in-person and on-line support groups. With that said, though, there are differences in on-line and in-person support groups. Which one to choose depends on what you are hoping to gain from the group. It is also somewhat dependent on your individual style of relating to others. Do you want personal contact and the ability to see your group members or are you more comfortable with being able to “tune in” whenever you have time and read and respond to what is talked about from the privacy of your home. I have been in both and I honestly think that they both have a lot to offer.
The in-person support groups generally meet once a month. They usually have a group leader who is a mental health professional and works primarily with eating disorders. The group leader guides the conversation and can provide professional advice and resources.
One of the advantages of an in-person support group is the availability of a group leader who is a mental health professional. This person can guide the conversation and keep the group focused. He/she can refute errors and keep bad or ill-informed advice from spreading throughout the members. Leaders help group members express themselves and can ask questions that a lay person might not think to ask. The leader is not there to dictate treatment or interfere with your current providers. He/she is there to provide resources, if they are needed, explain or answer questions about various treatment modalities, and give information to new members and guard against new members being inundated and overwhelmed with advice and suggestions from concerned and zealous members. The group leader is also there to talk about the day to day difficulties of caregiving and to help ensure that all group members are included in the discussion.
In-person support groups allow for personal contact. They are generally much smaller than on-line support groups. Group members are from the same geographic region. Most of the resources that are shared are available to the entire group and are facilities or providers that are within driving distance of all members. The individual members see each other and get to know each other on a very personal level. Listening to fellow caregivers share very personal information, they come to know family members by their names, they hear very intimate details about the struggles of each member of the group. They can ask questions of each other and feedback is immediate. The members can see each other and this provides a different level of communication. Seeing the person speaking provides the listener with much more information through the speaker’s tone of voice, body language, and facial expressions. The listener can glean a lot of information in what is not being said as well as what is spoken. The group leader is able to identify members who may be in need of more intensive support and provide feedback and resources for them. Individuals having a particularly rough time can be comforted by their group members both with words and sometimes with a much needed hug or hand holding.
The in-person support group often feels like a family of sorts. Many times personal friendships are formed and the members can call each other when they are in crisis. Personal help can be given when a crisis occurs (sometimes not eating disorder related i.e. death in the family, illness of caregiver, etc.) in the form of physical help with household chores, meals, etc.
In-person support groups are not for everyone. For those that like anonymity in expressing their feelings and concerns, this would not be a good fit. Some people express themselves better in writing and on-line support groups facilitate that expression better.
Because there is normally only one or two leaders running the in-person support groups, members must trust that the information they provide is accurate and sound. Because we are all human and subject to the frailties of the human condition, not all leaders are good leaders. Sometimes, a good leader might just have a personality that doesn’t click with you. That might also be the case with the group members. They might not be a group in which you feel that you fit in for one of any number of reasons including personalities, group dynamics, age, gender, cultural, etc. You might have to try a couple of different groups to find one that fits for you.
For those who want more support than once a month, the in-person support group might not be a good fit as they typically meet monthly (there are variations, however). Those living in states that have snow in the winter might be affected by cancellations which would not be an issue with on-line support groups. The fact that you have to leave your house and drive to the group might turn some people off. The in-person groups are also limited by the fact that they have one specific day and time that they meet and this might not be able to be worked around your schedule.
On-line support groups have the advantage of availability. They are always available. There is nowhere to drive and no schedule to work around. If you are having a hard time and need to vent or if you have a question, it can be asked at anytime during the day or night. Because on-line support groups often have hundreds of members and span many countries, you will likely get an answer to your question or a supportive response to the expression of your feelings even in the middle of the night. They are there, literally, at your convenience. You can go on-line as little or as much as you want. Because on-line support groups span many different countries, you get many different perspectives and many different treatment approaches from different cultures. Due to the large membership there is a lot of variety and many ideas. A great deal of information is shared through these groups and keeping up to date on the latest research is not difficult.
On-line support groups offer anonymity of sorts. You are not looking at the people you are speaking with and, for those who would have a tough time pouring out their feelings in front of others, this may be a safer option. Some people are able to be more honest and forthcoming when they don’t feel that they are being watched. There is no pressure to provide on-site help or meals to group members when you are already feeling overwhelmed and struggling to provide those things in your own home. There is some flexibility to do that and have personal contact, though, as some on-line group members living in a common geographic area do choose to meet together and socialize. This allows for friendships to form and can add a personal touch that some find missing.
For those who like a more conversational flow, this might not be a good fit. Responses are not always immediate and this can interrupt the flow. Sometimes, multiple people are participating in responding to the post at the same time and the focus can change, thus interrupting the flow. The conversations are often short and sometimes the reader is left with the feeling that they are incomplete. The other difficulty is that you cannot hear the tone of voice or see the expression and body language of the writer, so this leaves a great deal left to the interpretation of the reader who might misunderstand the feeling or intention of the writer.
There is generally no mental health professional leading an on-line support group. In fact, many on-line support groups require that you have no professional connection in the field of mental health as part of membership acceptance. There are moderators, or group leaders, but they do not have a mental health background (again, there are exceptions). They are usually caregivers themselves. While they will set some rules about what can and cannot be discussed in the groups, it is more loosely structured than the in-person groups. This can be a tremendous advantage as everyone feels very comfortable expressing themselves and feels as if they are on a level playing field, so to speak. This can sometimes facilitate more honest expression of opinions and feelings.
The disadvantage that I have observed is that often one or two people emerge as dominant in on-line support groups (this is really group dynamics in general) and they are the same people answering many or most of the questions and addressing new members. Often they are viewed by other group members as the “expert” or “go to” person/people. This isn’t always a bad thing. Many times these group members have a great deal of ‘on the job’ experience which is very valuable. I also believe that they are very well intended. I have observed, though, that often these same well intended people give advice that they really have no business giving. This is in the form of recommendations to leave certain providers, directives, not opinions, about which treatment modality is best and very specific recommendations and comments regarding treatment that are wholly inappropriate because the advice giver does not have enough information or mental health expertise to make the comments/recommendations they are making. This is very dangerous and often the group moderators do not intervene as they should. On-line support groups span a great distance and the members do not personally know each other or the eating disorder sufferer involved. The kind of advice to which I am referring is really dictating treatment and has no place in a support group and can damage very good treatment relationships with that member’s providers (see “When Advice Crosses the Line”). This is huge pet-peeve of mine and this is probably my biggest (and only) criticism of on-line support groups (and this can occur in-person as well if the moderator is weak or there is no professional moderator, but I have only personally witnessed it on-line).
I have been involved in both on-line and in-person support groups and I must say that I really like them both. If I absolutely had to state a preference, I would have a difficult time doing so. I might lean, ever so slightly, in favor of the in-person group, but it really is ever so slightly. I think, to be honest, some of that preference could be attributed to my age and the generation in which I was raised. Because I am older, I was not raised in the world of social media and I am not as accustomed to it as my children are. I do like that personal touch and I do like the information that I get from tone of voice and body language. I do feel like I get a lot of unstated, and important, information that way. On the other hand, I am not familiar with the on-line language. My children are quite comfortable and feel that they understand the spoken and unspoken in that milieu just fine. My discomfort and lack of ‘habit’ with it likely shapes my leaning to the in-person, which, again, is very slight. Having said that, though, I have also enjoyed the distance I can have with the on-line groups and the ability to edit what I am saying and to engage whenever I want to. I like the freedom that the on-line groups give me, even if I do feel a bit like a fish out of water with the technology. Many of the on-line members would likely join me in that feeling and probably communicate on-line like I do……..someone from a different generation.
I am sure that there are many other pros, cons, and general information about support groups that my readers can add. For now, I will leave it at this. Caregivers need support and, however that support is received, there is no right or wrong way. One size, and one support group, does not fit all. There is nothing wrong with engaging in both types of groups at the same time. They each offer distinct advantages and you might find yourself doing both or sliding back and forth between the two as your needs and circumstances change. What is most important is that you are getting care for yourself as well as for your loved one. We are fortunate to live in a time in history where we have so many choices and that very few people are left with no options at all.