The Buried In Treasures Workshop
by Randy O. Frost, PhD
While we have made great strides in developing a therapy for hoarding problems, obstacles sometimes prevent people from getting this treatment, such as the unavailability of trained therapists, the costs associated with therapy, or the personal reluctance to engage in therapy. Alternative strategies can provide help in such circumstances. Self-help books provide potentially useful programs, but in my experience, it is difficult for people with hoarding disorder to benefit from such efforts. Support groups are another option, but frequently they become bogged down with discussion with little effort at change.
In response to a request from our local Hoarding Task Force, we have developed an action-oriented self-help support group program called the Buried In Treasures Workshop. The Buried In Treasures Workshop is a facilitated support group that is highly structured and time-limited. The workshop consists of 15 sessions spread over 20 weeks. Each session focuses on a chapter in our book, Buried in Treasures: Help for Compulsive Acquiring, Saving, and Hoarding (Tolin, Frost, & Steketee, 2007, Oxford University Press). The sessions are facilitated by a nonprofessional who may have (or have had) hoarding disorder or a special interest in it. Activities include discussion of each chapter, exercises from the book dealing with acquisition, discarding, and disorganization, and homework between sessions. Our initial research (based on a 13-week version of the workshop) indicates that up to 73% of participants are much or very much improved by the end of the group (see Frost, Pekareva-Kochergina, & Maxner, 2011), and that participants improve significantly more than people on a waiting list for the group (Frost, Ruby, & Shuer, in preparation). The manual for facilitators (Leading the Buried in Treasures Workshop: A Facilitator’s Manual) can be downloaded and used to set up a workshop in your community. If you set up a facilitated support group, I would be very interested in hearing from you about your experiences in using the manual and running this workshop.
We are also working on a continuous support group that can follow the BIT Workshop. Instructions for starting the Unburied from Treasures Maintenance Group and included in the Facilitator’s Manual.Frost, R.O., Pekareva-Kochergina, A., & Maxner, S. (2011). The effectiveness of a biblio-based support group for hoarding disorder. Behaviour Research and Therapy, 49, 628-634.Frost, R.O., Ruby, D., & Shuer, L. (in preparation). A wait-list controlled trial of biblio-based support groups for hoarding disorder.
OCD And My Personal Road To Recovery With Self-Help Group Support
If you have arrived at this web site you have probably just been diagnosed with OCD. But you've also just made a "connection" that brings hope. There is life after OCD! There is recovery and the possibilities are endless for a productive change to take place in your life! Being diagnosed was my first giant breakthrough!
You are not mentally ill, but you have an illness that has a name: OCD! This first step is important because you may no longer feel that your life is on a downhill spiral, everything you hold important will abruptly end with the shame of discovery, your life is worthless, close friends or a spouse will not love you unless you abruptly change.
Your biological family may have labeled you lazy and unwilling to help yourself. They may have stopped visiting. They seemingly can't understand why you won't change and clean up the warehouse you live in, or undo the maze you have created for yourself with stuff piled everywhere. They have no concept of the paralyzing fear that grips you when you try to take action, that you are a prisoner in your own home, that you can't find the keys to unlock the jail you find yourself in! It never occurs to them that you may be too ashamed to bring in a locksmith to rescue you from your self-made dungeon.
Neighbors have no idea how you live. Friends wonder why you always meet them at malls or coffee shops. Perhaps like me, you give others the impression that your work schedule is so busy you prefer to entertain at a restaurant so that you can have a nice quiet meal and catch up on news. In my case, I would simply say, "I had no energy left to cook and would just like to focus all my attention on visiting and enjoying your company." This worked like a charm in helping me avoid confronting my hoarding problem!
That is the situation I found myself in three and a half years ago. My husband was out of town. I was out of excuses and answers for my dilemma, and exhausted from hiding my shameful situation. I felt like death would be a welcome release! I was depressed, unable to problem solve, and my doctor simply was not clueing in on my problem. Even though I had given him enough information. He blamed my excessive work habits. I began to realize my work was a wonderful excuse for my clutter maze, spider webs and all. If I couldn't get help through the regular channels, I decided I would have to begin searching seriously for an answer. I was beyond excuses. I no longer wanted to be untruthful about my lifestyle. I wanted a life beyond piles. I wanted a life that would fulfill me as a person. I wanted to be fixed! I wanted answers and I longed to be like normal people. I began researching that day. I stopped my primal scream, washed my face, and looked for help. I started making phone calls, and got "a hit" from a woman who knew all about OCD that day. I now had a name for my disorder. I called all the information numbers she gave me and found a doctor who dealt only with OCD clients. I was on my way. There were no instant cures, or a wand to wave over my mess that would make it disappear. I took small steps, saw my doctor twice a week, and worked on the assignments he suggested. It took months of work, but my husband started to see changes; I began to laugh again. I began to work on small areas in the house and slowly reclaimed the house ... room by room! My biggest success came with keeping these same areas clean and uncluttered.
It was during this search that I discovered a self-help support group. I was delighted. I was not alone, and there were other delightful souls that struggled with the same problem. It wasn't the usual chat group; they expected commitment, setting boundaries that made recovery a reality. They gave information that was liberating and also sobering. I learned that OCD could get worse with age. That was a "wakeup moment" for me. I read and devoured all the information that came across my desk. I wanted to escape the horrible bondage I found myself in. I wanted my new life to be free from stuff. I read, learned and started to act on the suggestions of others that had recovery behind them. That became my lifeline. If they could do it so could I. I was determined. I clung to my newfound strategies like a junkyard dog with a bone. I got tunnel vision, and focused on the new journey to freedom. I smile now thinking about it. I became obsessive about the journey, if only for a season. Then a "bomb" hit my newfound strategies. My husband wanted to move! I love the city, my job and I was falling in love with my house again. I dug my heals in, feeling he would get it out of his system and we would get back to life the way it was. Wrong!
Looking for a new home was depressing; I hated every minute of it. I had panic moments. Not only did we have to move but our house would have to go on the market. Then my husband made his biggest mistake. He said we would have to get rid of most of our stuff. I told him politely that our looking days were over! I went into a tailspin and didn't talk. I stopped working on the house but I did keep up the reclaimed areas. If he even thought about moving I could sense it. I got plain short-tempered and edgy. I suggested perhaps he should think about a life on his own. I stopped feeling warm and loving towards him. He backed off and stopped clucking about moving. I slowly got back into full time decluttering and writing faithfully to my support list. It was an intense program for me and I was determined to join the winners on the list!
The cozier our house became, the more hubby became helpful. He didn't make demands on tossing. He just asked to help. He waited for me to give directions, and would pitch in. We began to drag more and more stuff to the various thrift stores. When organizations phoned looking for donations we filled our front stoop with stuff. I was on a roll, and re-establishing my love relationship with my husband. I began to see him in a new light. He took me to every doctor's appointment to encourage me. He never asked questions. He started to clue in to my needs. The day I saw my doctor was always difficult. I was exhausted, but I hung in. The doctor slowly started putting my appointments to once a week, and then every other week. I knew I was getting better. I was beginning to problem solve, seeing change. The group became my lifeline, they encouraged, made suggestions when I asked for help, and influenced me to press onward.
It was during this stage that I again revisited my husband's request. I started looking on the Internet for houses. We talked about it. We had a meeting of the minds and started to look earnestly for a new place. My spouse also knew it would be stressful for me. He told me we would buy first and then put our house on the market. It made sense. It took the stress from me and we found a house with possibilities that we put an offer on; in a week we owned it. It was then that we started working in earnest to clear the house. I started my second stage of the New Journey. I dubbed it, "The Geographical Cure!" It started with me quitting my job and going into retirement. My employer was not happy but I could never have worked and cleared the house at the same time. It started to come together. The main floor was well on the way; we kept at it. We also cleared the attic, and finally hit the basement. I found disgusting things like mold, and areas that my old dog used as a "bathroom." I began to see how OCD had affected my life and made it a dark secret of pure disgusting circumstances! I want everyone that reads this to know you are not alone. There is a future for healthy change.
We finally got floors uncovered, and discovered baseboards. We repainted, and made the house shine and inviting. I fell in love with it all over again and really didn't want to move, but the new house was waiting for us.
We rented a storage locker which made the old house look bigger with less in it. That was our Realtor's suggestion. We began to shift our belongings slowly, but with much fun, we moved our treasures into the new house. Within a couple of weeks the old place sold for a good price. It was a major victory and celebration for us. We found a mover who took all the big stuff for us and finally a day before closure we moved into the new place with our old Yorkie and Siamese Cat. Was it worth it? Yes! Yes! Yes! We bought a different house that needed a lot of work but it has a wonderful open concept. We bought a place with lots of possibilities: I now have a country house in a large village. I have arrived to the place that people can drop in. We are always company ready. It may be a bit dusty because of renovations but there is no clutter on the floors. We hope to have all work completed in another four years. Meanwhile I putter. This winter I hope to unpack the remaining boxes, hang pictures and keep what I need and give the rest away. My ongoing motto is, "Keep The Best And Toss The Rest!"
What have I learned? If others could do it, so can I! And if I can do it, so can you! I have arrived, but am always very aware how easy it is to backslide. I constantly keep my guard up to not lose my ground. I often reflect on where I have come from because it keeps me focused and honest. I still remain active on the self-help list. It is my reality check to share regularly and also to help someone else to attain liberty in their "OCD Journey." You should be encouraged today. If I can do this at retirement age, so can you. It's time to shake yourself off, find the tools you need to begin your journey and just start: one small victory at a time and build on those achievements. Then one day, you too will have arrived. I wish you success as you claim what you have lost! Just remember, "Keep the Best and Toss the Rest!"
Online Self-Help Support Groups
by Paula, Christie and Phyllis
Are you thinking about starting an online support group for hoarders or clutterers? Or perhaps friends and family? 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 of others 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" that each fulfill 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 groups 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 special topcis in hoarding. One area especially needed is a group for 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 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, and polls is 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.
- 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.
How to Talk to Someone with Hoarding: Do's and Don'ts
Click here to download PDF (hosted on Mass Housing website)
A related self-help approach is to create a Facilitated Self-Help Group. We (Frost and students) have developed a 13-week self-help group that is run by a non-professional facilitator. It runs much like a college course with readings and homework assignments out of Tolin et al.’s Buried in Treasures: Help for Acquiring, Saving, and Hoarding. While this is not a substitute for cognitive behavior therapy for hoarding, our early studies show promise for this approach. In this section of the website you will find a Facilitator’s Manual for how to set up and run such a group.
Recommended Books on Hoarding