Starting and Maintaining a Support Group
- by Jennifer Raikes
- © Trichotillomania Learning Center, Inc. 2008. All Rights Reserved
Editor's Note: Over the past few months, TLC has received numerous requests for this article, as well as the other materials and "how-to's" we provide regard to how to run a support group. Jennifer's article, originally published in 2001, is a reminder that support groups are a vital part of the recovery process.
Jennifer is a founder of the Manhattan Trich Support Group, started over 12 years ago. The Manhattan group is often referred to as a model for a successful support group, as it has such longevity, and remains active in the local community.
Note from Jennifer: When I started this group, I (and TLC in general) was much less aware of skin picking as a problem (even though I do it a bit!) so this article often refers only to “trich” – but over the years the NYC group has been open to pullers and pickers and this “mixed” group has worked very well.
Why Start a Support Group?
On the most practical level, the group is a great source of information about trich resources. We share opinions about doctors, hairdressers, trich "toys," medications, and relaxation techniques. We also help to keep each other aware of our recovery goals and cheer each other on.
The experience of being in a successful support group is much deeper than anything concrete that we do for each other. Some of it comes instantly - the immediate relief of connection - but most of the benefit grows with time and intimacy. Not every meeting is upbeat, but the overall process is joyous.
Between 2-4% of people have trichotillomania. So however alone we feel, we are in fact surrounded by fellow hairpullers. If you would benefit from the experience and encouragement of other people who are living with trich, it is entirely possible to get yourself that help by starting a support group.
I asked some of the members of my New York City support group why they come to meetings. I hope their answers will inspire you to start a group in your area (read them on page 11). I believe that support groups can be helpful in every aspect of recovering from trich, from reducing our pulling behavior to the most important goal: feeling happier.
Getting Started
Assess Your Own Readiness To Start A Group
What are your expectations for the support group?
How do you hope to benefit?
How will it affect you if the group does not meet your expectations?
Are you likely to move soon?
Are you coping with high levels of stress at the moment?
How much time do you have to devote to it?
Choose a Time, Place and Format
Time
As the person who is putting forth the energy to start and maintain the group, it is vital that you pick a time (and place) that fits your own schedule. You may want some input from other potential group members, but it will be impossible to please everyone - so don't make this a democratic decision.
Place
There are many options of places to hold support groups. Local hospitals, libraries, churches, dance studios, or community centers may all have rooms they will lend or rent out for a small fee. Another choice is to hold the meeting at your home (or rotate meetings between the homes of various group members.) There are pros and cons to each choice. It might be more comfortable and convenient for you to hold the meeting at your home, but will you be concerned about the safety of inviting in strangers? Other issues to consider in choosing a location are: privacy, allergies, and accessibility.
Format (Once we're all together, what do we do?)
There are infinite possibilities for how to structure your meetings, and you will likely adjust the format as the group develops.
This format is what TLC uses for its support group. It is suggestive only, and can be recopied and adapted however you like. Note that, although it is compulsive hair pulling and skin picking that has brought us together, the format addresses eventually becoming free of compulsive behaviors in general.
Opening Statement
Welcome to the ___________ group.
This group is based on the process used by the Trichotillomania Learning Center to assist in healing from the effects of compulsive hair pulling and skin picking in our lives. Donations are accepted with gratitude, and applied toward operating expenses. There is no financial obligation to participate as a member of the group. You have paid the price of admission with your life experience, which brings us together.
As with 12-step meetings, what is said here tonight is confidential, and should not be discussed outside the meeting. This is a safe and non-judgmental place in which to explore and heal, and one of the major goals of the group is to assist each individual in moving beyond compulsive behavior when they are ready.
Meeting Format:
Each person checks-in: This is done with absolutely no cross talk, and should take no longer than 3-5 minutes per person. Listen to what is being said. The archetypal voice of trichotillomania is expressing itself through each of our lives, and we are here to honor the need, heal the wound, and grow, each according to our own destiny, learning to live in balance with the forces of life.
After the sharing, the meeting is opened up to become a discussion group. Remember, the goal is not confrontation but support. It is important to remember that many, many tiny changes, over time, add up to transformation, so keep the focus of the meeting on willingness to change. It is the responsibility of group members to stay in the present, keep discussion on themselves, and help the group stay focused on issues of recovery.
Some additional things to consider:
How often should the group meet?
Should this be a therapist-led group or a peer group? (Or some combination - perhaps a local therapist would like to lead the group once a month with peer-led meetings between?)
Do you want to follow a 12-step approach? Or utilize self-help tools such as workbooks?
Is the group restricted to people with trich or are friends and family members welcome at meetings?
Is it for adults or children or both?
Are both men and women welcome?
Is the meeting open to new members?
Is consistent attendance required?
Instead of using the TLC format above, some groups choose to follow a 12-step format. Or, your group may choose to use workbooks such as "The Hair Pulling 'Habit' and You" by Ruth Golomb and Sherrie Vavrichek, or Doug Woods and Michael Twohig’s “ Trichotillomania: An ACT-Enhanced Behavior Therapy Approach” as guides. Whatever format you choose, remember that, as groups change and evolve over time, their needs may also change, and the format of your group may need to be adapted accordingly.
If there are any expenses involved in running the group, you'll need to decide how to collect donations to cover those costs.
Again, if you are the primary force in starting this group, it is important that it meet your own basic needs or you will burn out quickly.
Get In Touch With Other Pullers
Initial contact: About a month before you want to hold your first meeting, draft a letter stating the time, place and date of the initial meeting, and how to reach you for more information. TLC will mail this letter to everyone from your area that has ever contacted TLC for information (there are some costs for postage, call TLC to discuss).
Also consider posting flyers on community bulletin boards or a small advertisement in a local paper. Post advertisements on www.meetup.com, www.craigslist.org, or other regional community websites. Some people have even appeared on local television news programs. Continue to keep in touch with TLC about your group. TLC will publish your information in the newsletter and on our website, too.
How will support group members continue to get information about meetings?
A phone message? E-mail? I chose to set up a voicemail number for our support group, so that I wouldn't have to give out my home phone number. Each week I leave a message and members call the number to find out where the meeting is happening and to let me know that they'll be attending. These days, email may be all you need to use. Email groups are also an effective way to keep group members current and allow for continued support outside of the physical meeting space. Both Google and Yahoo operate group message boards that are secure and private.
Maintaining the group
Support
Keeping a support group going is a challenge - but a rewarding one. The group is a relationship between people who may be very different, despite this important problem we share. We are at various stages of recovery (or lack thereof!). These differences can make it difficult to meet everyone's needs. But in my experience, they also make the group richer by providing diverse perspectives.
The general attitude should be one of support for each other. That may sound obvious, but it is very common to feel a need to justify our pain by minimizing that of others. Often we've come to group after years of pulling, and our suffering may not have been taken very seriously in the past. Many of us want to say, "My pulling is so much worse than yours!" It is important to remember that we can't measure the pain of trichotillomania or skin picking by the quantity of damage. Everyone at a support group meeting has chosen to give up his or her free time to be there. That says a lot about what we've all been through.
Persistence
There is no one recipe for how to make a group work. But persistence is a key ingredient, especially if you are starting the group alone. I have found that attendance at meetings ebbs and flows mysteriously. There may be many meetings at which attendance is disappointing. Group members who seem committed may stop attending without a goodbye. I know that I've often been the only person to show up for the meeting. But I stuck it out. And attendance has always revived after a short while. New members join and old ones re-surface.
Communication
As with all relationships, open communication is necessary. That's obviously true for conversations about trich. But it is also necessary to be able to discuss issues about the group itself. This can be socially awkward. For example: "I am not getting what I need from this group because too much of our attention is focused on one member's problems." Or "I feel that the tone of our conversations has become too negative." It is tempting to remain silent or quit group rather than talk about problems openly. As the host of a group, I ask you to please speak up. There may be other members who have noticed the same problem. You are responsible for creating the group you want, or at least giving it your best effort.
Positive comments and new ideas are also important. Ideas like, "I'd like to find a way to support each other more actively between meetings." Or "Let's have a meeting where we invite our friends and family."
Individual Therapy
We all have problems in addition to our trichotillomania. Sometimes these are important to share at a meeting because they impact our pulling. But it can be very difficult when other problems dominate group discussion. The support group can do a lot of great things, but it is not intended to solve all problems or substitute for individual therapy or medical attention when it is needed. It may be important to urge members who exhibit signs of depression, or other problems, to seek help outside of the group setting.
Stick to a Schedule
Have a scheduled start and end time and stick to it (at least approximately). This will avoid a lot of frustration. Even when the meeting is going great, people need to get home to their families (or beds) at a reliable time.
Kick-Start
Finally, every now and then, the group may need a kick-start. Should things stagnate or you lose motivation, it may help to hold a brainstorming meeting to select discussion topics for the meetings. Or arrange for guest speakers, or organize a special event. Some events other groups have held include: a picnic (or Trich-Nic, or Pick-Nic) for members and their friends and families, a knitting lesson, talks by doctors who treat trichotillomania, or a hypnosis session.
Finally, use TLC as a resource. Join other TLC Support Group Leaders on Yahoo, where group leaders can chat about format, get new ideas for projects, or just get support when the turnout is low. Consider an invitational mailing through TLC to other contacts in your area. Get resources and press contact information to do an event in your community. Call TLC anytime to discuss your thoughts and concerns on your group.
It will take some work, but I can honestly say that starting and sticking with the support group has been one of the most rewarding things I’ve ever done. I say, “Go for it!” 