Online OCD Self Help Information

By - Paula, Christie and Phyllis


Are you thinking about starting an online support group for hoarders or clutterers? Three online support group "list-owners" share their experiences.


We began the three online support groups for OCD hoarders with the desire to work directly with others in our own personal quests for recovery. Each of us recognized that within the isolation of our homes, we weren't reaching our personal goal of a cleared home.


By reaching out to others just like ourselves we changed our own lives in the process.
We would like to encourage others to establish online support groups. They can meet the needs as well as to provide vital services to the larger OCD community. We have some tips to help ease the way if you considered starting a list of your own.


Our own three groups are serviced by "Yahoo!Groups" -- http://groups.yahoo.com/ a free, user friendly outlet. We have three "sister lists"; each fulfills a different need for their members:

  • Paula hosts H-C (Hoarding-Cluttering) at http://health.groups.yahoo.com/group/H-C/, it is the longest running and largest of the three groups. This is the "launch pad" for those who just learned that they have something called OCD or hoarding. This is where recovery begins for most of us. That is because there's a bounty of information to help the newly-diagnosed to learn about hoarding and what they can do to help themselves.
  • Christie leads Dehoarding-Goals. This list was organized for H-C members who were more adept at setting goals and following through on them. There is less chit-chat. It is due to less of a need to learn how to unclutter and dehoard. This group is geared to setting and reporting on monthly goals. It has direct professional involvement. Active membership on H-C is a prerequisite to joining dehoarding goals.
  • Phyllis is the manager of Post It-Boast It, recognized as "Pi-Bi," the newest of the three lists. This list focuses on setting goals for dehoarding, housekeeping, healthy lifestyles, and anything else of interest to its members. It focuses on topics that would affect them in their uncluttering and dehoarding efforts. Members borrow ideas from professional organizing lists such as "FlyLady" and "Get Organized Now". This helps in their efforts to meet the ultimate goal of an uncluttered home, mind, and life. Active membership on H-C is a prerequisite to joining Pi-Bi.

All of these group have self-imposed membership limitations. This helps to manage the groups and meet the individual specialties of each group.


There is a need for different groups about hoarding to meet other needs. One area especially needed is for those of parents and family members of hoarders.


Here is a link to the OCD groups that are already in existence: http://groups.yahoo.com/group/OCDSupportGroups/links


As more and more people become aware of hoarding, there will be a need for additional basic lists such as H-C.


Based on our experience, we offer some important recommendations to be considered when starting a new group:

  • It is essential that the list be professionally assisted by a practicing psychologist and/or medical doctor. They must fully understand and treat people with OCD and hoarding difficulties. The professionals connected to the list do not need to read each post. They must be available to be called upon to respond to questions/issues that arise.
  • The list-owner needs to decide the focus of the group. They must decide membership limitations, and what information will be available to the members. List rules must be decided upon and enforced evenly and fairly.
  • The above point is important because confidentiality, anonymity (use of aliases), and a feeling of being in a safe place are very important to maintain. This confidentiality and anonymity is met by having a private list with postings that do not show up in search engines.
  • Utilization of files, links, archived messages, literature, polls, are important. So that there is some continuity, especially for new members. By having this type of information available on the list web site, independence and self help are encouraged.
  • Our experience to date shows that required, regular postings by all members one post per month minimum keeps people engaged and allows members to know who is among them. By prohibiting lurkers and encouraging participation, a sense of family and friendship develops. That is difficult off-list (a.k.a. outside of the group) because of the isolation that many hoarders experience.

Novices learn the ropes of setting up an online group in a short time. This is thanks to organized groups of fellow list-owners such as the excellent Email List-Managers, found at: http://groups.yahoo.com/group/EmailList-Managers/.


We are also involved in a smaller group of list-owners, whose focus is strictly OCD, called "OCDSupportGroups," at http://health.groups.yahoo.com/group/OCDSupportGroups/.


Many of us within the OCD community have chosen Yahoo! Groups to host our lists because they are free and fairly user friendly. There are other services as well, such as Topica, Smartgroups, or listservs such as Lyris, Mailman or Majordomo.


After you decide which service to host your list, you'll want to consider how to customize the settings. There are many decisions to make regarding the way your list is set up. In Yahoo! Groups you can click on the help button, which will give you some answers to questions you may have.


Will you have open or closed membership? Membership must be carefully considered for any list to be successful. Spammers love open membership and so do lurkers. Our personal recommendation for any list that concentrates on compulsive hoarding is to have a restricted membership. This is to provide the type of safe, secure environment that will benefit the members.


Do you want information your list publicly accessible, or will it be for members only? We recommend that you keep the message archive, files, links section, polls and database. In other words all but the homepage private.
If you want members to feel safe to post, you will need to make the conditions as comfortable and risk-free as possible. Our experience with our own members is that they do not want their posts to show up in any search engine. Nor do they want anyone other than fellow members to have access to them. They want to know the other list members. So having a database or files with member's introductions is helpful.


Will attachments be allowed or rejected? By not allowing attachments, the risk for viruses is diminished. Yahoo will not archive attachments to messages. So if it is important enough to be said, put the information into the e-mail message, or provide a link where the information can be accessed.


We would like to recommend that you establish your list. Is is important to become comfortable with the settings before you open the list, up to active memberships. Once your list gets going, there will be a lot of activity. That will take a lot of your attention, so take the time in the early stages to get comfortable with the set-up. This pre-membership time will allow you time to fine tune the links and files, They will be a resource for your members.
For those unable to see qualified, trained professionals having the resources to access the professional help that is available in our home areas, having an on line support group that focuses on our difficulties, has been the answer for us.


It takes time and effort to manage an online group, but the results are well worth it.
Countless people may benefit from the opportunity that you provide for them to find information, help, and support. This applies to their own recovery or in helping loved ones to recover from hoarding. We wish you luck and hope to have you join us in our efforts to help people recover from this disorder.

 


Back to Hoarding Information -->

 


Mark Pennington -Mystre Bengals - Founder