by Jonathan Grayson, Ph.D.
From OCD Newsletter, 1994, #8
Printed with permission from Jonathan Grayson, Ph.D.,
coauthor of Freedom From Obsessive-Compulsive Disorder: A Personalized Recovery Program For Living With Uncertainty.
This article is a very belated companion piece to another
newsletter article entitled "Will You Relapse" (OCD Newsletter,
1991, #5). Hopefully the third installment concerning OCD
camping trips will come quicker. OCD Support groups are
rapidly multiplying across the country and this is wonderful.
However, people frequently ask us for advice as to how to keep
a support group both vital and alive. GOAL (Giving
Obsessive-compulsives Another Lifestyle), the Philadelphia
Affiliate's support group, has been running since 1981
perhaps giving us the distinction of being the oldest OCD support
group in the country. Over the years we have gone through
many transformations to survive and I believe we have found a
format that others may find helpful in starting and maintaining
their own groups.
Before going further I think some history would be in
order. GOAL began while I was working with Dr. Edna Foa on
the first of her many NIMH grants to study OCD. Two
independent events lead to the group's formation. Gayle
Frankel, the current president of the Philadelphia Affiliate and
whom Dr. Foa had treated for OCD, had asked Dr. Foa if she
could start a support group. At the same time, having observed
the similarity of relapse in OCD and addictions, I had begun
talking to Dr. Foa about the possible use of groups as a relapse
Dr. Foa put us in touch. With Gayle doing most, if not
all, of the initial leg work the group was born. From the
beginning I emphasized the idea of choosing behavioral goals to
work on between meetings. It wasn't long before the members
began calling themselves goalies and found a way to make an
acronym out of GOAL. Now, over thirteen years later, it is still
running although at a different location and with some changes
in our format. The changes are both the result of our
experiences and a modification of our original purpose.
Initially the group's mission was relapse prevention as all
members had been through an intensive behavioral therapy
program of exposure and response prevention. Now the group
serves then entire range from those who have been through a
behavioral treatment program to those who have just discovered
that their problem has a name, that others suffer from it and
that there is help. Under these circumstances, what makes for an
effective support group? First, if possible find a professional
experienced with OCD and willing to donate his/her time.
His/her major contribution will be keeping the meeting on track.
Interrupting a member who is either monopolizing the time,
changing the subject, or talking about personal issues that
appropriate to the current topic can be exceedingly difficult to
accomplish, especially if the individual in question is in
obvious pain or distress. If the person's distress is very great, a
professional can take them aside to help them, while allowing the
meeting to continue. Finally, the professional can be present to
answer questions that may come up that others do not have the
expertise to answer.
Our clinic, The Agoraphobia and Anxiety Treatment Ctr.,
donates time to assist the Philadelphia Affiliate of the OC
Foundation in running their groups. We are not the only willing
professionals in the country. However, I realize that having a
professional present isn't always possible. Hopefully the below
guidelines will be helpful in helping you to run successful and
Because of our (GOAL's) experience, we believe that to
survive in the long run meetings must serve a threefold purpose:
1) provide a place to discuss issues directly and indirectly
relevant to OCD;
2) foster and support individuals taking control over their
OCD symptoms (I promise to get to this eventually);
3) allow informal socializing.
It may seem obvious, but it took us seven of our thirteen
years to figure out that we needed to formally break the meeting
into three parts to accomplish the above. Meetings begin with
a general discussion of a topic chosen by the group leaders prior
to the meeting. This generally lasts from 8:00 pm to 9:30ish and
is followed by goal planning. Goal planning lasts another half
hour to an hour. Then with our formal business completed,
refreshments are served, everyone socializes and how long this
lasts is unpredictable.
If you are to succeed, you need to have a core of group
leaders who are in agreement as to how meetings should be run.
The leaders are responsible for; keeping the group on the
chosen topic, sensing when the group wants to move on to
another individual and ending the initial discussion at a
previously agreed upon time. The OC Foundation has a useful
set of guidelines on how to do this. As noted above, the topic
should be chosen by group leaders prior to the meeting. Topics
can be directly related to OCD (e.g., What are we besides
obsessive-compulsives? Why do we hold back in treatment?) or
indirectly (e.g., How do you cope with anger? Guilt?). It is
very helpful if the leaders start off by describing how they are
personally affected by the issue.
Topics concerning medication are taboo. This is not to
deny a biological component in OCD, but a group can't change
biology. It can provide support and help members to learn how
to regain control of their behavior. Information about
medication is appropriate to discuss: at a special meeting with
invited speaker who is knowledgeable about OCD and
medication, with one's own doctor or informally at the end of
At the beginning of each meeting, special attention should
be given to new members to explain how the meetings work.
Try to remember your first time meeting with others suffering
from OCD. It can be an overwhelming experience. Some of
you may recall the wonderful relief of not being alone and the
desire to share everything about yourself with people who know
exactly what you are talking about. At the opposite end of the
spectrum are those who were afraid that their OCD is different
from everyone else's and listen to everything the others say to
discover those differences. In any event new members will have
10,000 questions hoping that someone present has the magic
answer. You may want to include these sentiments in your brief
introduction of the group while assuring them they will have
time to ask everything they want to at the end of the meeting.
Having a handout that describes the general structure of the
meeting is especially useful to new members. Also, such a
handout can be sent to area professionals and physicians to let
them know about your group. (We will gladly supply ours as a
Generally we go around the room letting each member
share his/her thoughts and feelings about the issue. Nobody is
forced to speak, so it is perfectly acceptable to "pass". Others
may have useful comments or similar feelings to express and we
permit this even if it is out of order. However, the group
leaders are responsible for guiding the topic and discussion.
They may find it necessary to gently confront someone with,
"yes, that's important and maybe we could focus on that in
another meeting, but now we want to try to stay with..." or "I
don't really want to stop you, but I have to make sure everyone
gets a chance to share their thoughts".
At some predefined time, between an hour and an hour and
a half the leaders need to shift to GOALs. These will take about
45 minutes. We often break into small groups of five to nine
people, each lead by a more experienced member of the group.
It is important that small group leaders reliably come to
meetings to provide continuity. They will need to write down the
goals of each subgroup, so that they will be available at the next
meeting. It's helpful if the groups can remain constant over
time, but we find this very difficult (actually impossible) to
achieve in the long run. New members are taken aside for their
own group where the idea of goals can be explained to them. At
this point, you'd probably like goals explained to you. Allow
me to caution you, it sounds easier than it is.
The basic idea is very simple, members choose a goal that
is possible to accomplish between meetings, usually a response
prevention or exposure goal. It is critically important that the
goal be behavioral and small. Everyone, especially new
members, has a tendency to pick something too vague (e.g., "I'll
cut down on my washing") or too big (e.g., "I won't obsess this
week"). The problem with the first is how does the individual
know when he/she is successful? Have they been monitoring
how much or how long they wash? And if they do well for one
day, is that a success? The same considerations apply to the
second goal. It also has the additional problem of being
impossibly huge as if recovering from OCD was a simple
decision. To make a goal behavioral requires you to be very
specific, at what times and circumstances will you not wash and
for how long. For example, a goal with washing might be: "on
Tuesday and Thursday this week between 2:30 pm and 3:00 pm
I'll do my household chores without washing" or "On Tuesday
and Thursday I will touch the trash can, contaminate my kitchen,
not wash for one half hour and leave it contaminated for the rest
of the day". The reason for being so specific is to make it easy
for you to know when your have succeeded and when you
In general, a GOAL should be active pick something a
dead person can't do. Dead people are notoriously good at not
obsessing, not washing, etc. On the other hand they are terrible
at confronting their fears. Even with obsessional problems we
can be behavioral. The individual can choose to continue their
normal activities rather than "freezing" themselves while they
try to figure out their obsession or to do a mental exposure. For
example, a suitable GOAL for someone's obsessions might be:
"Rather than trying to convince myself that I didn't run over any
children on the way home from school, I will spend a half hour
trying to convince myself that I left a trail of bodies behind me
and if I'm lucky I won't get caught, and if I do get caught I'll
have to live with the horror and shame of it forever".
For those of you familiar with the idea of exposure and
response prevention the above goals are familiar. To others I'm
sure it seems that either I'm crazy or what I'm suggesting is
impossible. Though there is some truth to the former, research
has shown that confronting your fears is critical for recovery.
Because exposure is anxiety provoking (please don't forget that
the alternative, giving into to OCD urges, is also hell!) the
goals you initially choose should be ones that you know you can
accomplish. Don't worry about them being too small; starting
somewhere and having success is more important. Remember,
when you are successful you will add new goals to your old
ones, so that over time your gains will increase.
We don't talk about failures to achieve a goal, not because
we're so positive or nice, but because as a group we are
committed to helping everyone get around their difficulties. For
us, a goal that wasn't achieved merely means we have to find a
different way to accomplish the same goal. Different, because
if you didn't succeed this time, then why should you succeed if
make no change in how you approach the goal. The first
possible way to make a goal different is to make it smaller,
perhaps you attempted too much for a first time. A second
possibility is arranging a situation so you can't fail. These
are limited only by the imagination of the group.
In general using the support from the group will
accomplish this. For example, the individual could call a
member when they are having trouble, or if they fail at this, a
member could call them at a prearranged time and wait on the
phone while the goal is accomplished, or the member might
actually visit them at their house to help them. Sometimes if
someone is intent on trying a goal without support, we try to get
them to agree in advance that if they don't succeed the first
week that they will permit support the second.
Sometimes people find the very idea of calling difficult,
especially if they feel the need at 3:00 am in the morning. We
often have these people agree to taking a goal of calling someone
in the group at that time when they aren't having a problem.
We do this because we have found that an individual who has
difficulty with this, has even more difficulty calling for help
when they are in distress. Thus not all goals that will lead to
improvement are directly related to those OCD symptoms.
Because a support group is not the same as therapy,
members are encouraged, not pressured into taking goals. Over
time we find new members figure out who is doing the best in
the group and they strive to follow their example.
During the final part of the meeting, refreshments and
socializing, everyone is free to share everything they couldn't
during the meeting. We believe all three parts of the meeting
are critical. The first part allows a sharing of feelings and
on issues of general concern to everyone. Goal-planning keeps
the meetings focused on what everyone can do to help
themselves and socializing helps bring everyone closer, which is
crucial, since members will need to depend upon the others for
support in accomplishing goals.
There are obviously more that could be written about this.
Please feel free to send questions to us. Starting sometime in
January you will be able to reach us through the online OCD
support groups on PRODIGY.
SOME QUESTIONS USED AT MEETINGS:
1. What else are you as an individual, besides OCD?
2. What one reaction by an important family member or friend to
your OCD or recovery most disturbs you ?
3. If someone would guarantee that at some unknown point in
your recovery all OCD thoughts and rituals would disappear,
would you be willing to work on all of behavioral goals
suggested by a therapist?
4. The "Why Me?" Syndrome How to cope with it?
5. If you could put yourself in your family's place, what would
you have them do to help you with your OCD?
6. What emotion best portrays how your family reacts towards
you and your OCD? What emotion best portrays how you feel
about your family during an OCD episode?
7. Denial: Do you use this in your life or recovery process, and if
so, how and when do you find yourself doing so? Would your
family agree with your evaluation? Would your therapist agree
with your evaluation?
8. Have you or haven't you accepted uncertainty and how has
this affected your recovery?
9. The 2 T's: TRUST AND TREATMENT How are they
connected for you?
10. There are times when we believe our symptoms, thoughts,
feelings, rituals have meaning and believe they could be true.
How can you motivate yourself under these circumstances?
11. (A seasonal question) The holiday is upon us, and we all
realize that it will bring with it additional stress. What
problems do you ANTICIPATE having at this time of year?
How are you going to cope with them in order to help
12. Other than NOT having OCD, what other thing would make
you happiest? Do you feel it's obtainable for you?
13. When you are angry, how does it affect your OCD?
14. When you have done exposures and response prevention and
feel that you are contaminating the people around you without
telling them, do you feel guilty? How do you handle your
15. What is your responsibility in treatment?
16. How often do you give yourself credit for the achievements
you've already accomplished in group or in treatment? Do you
find it easy or hard to give yourself credit for past successes
or do you dwell only on the work left to be completed?
17. Slips: When you slip what techniques do you use to help
yourself? Which techniques do you find difficult to apply?
18. Group discussion: What are the triggers of your OCD (Ex.
Overtiredness and various stressors)?
19. Have you told anyone about your OCD, if so whom, and under
what circumstances? Who do you feel you would not choose
to share this information with?
20. What 1 thing was the most difficult for you this week? How
did you handle it? How would you handle it differently in the
21. Four Guidelines given by Father Manzurick at our Guest
1. It is proper to enjoy God-given gifts of life, and improper to
deny oneself life's everyday pleasures.
2. No thought is inherently evil or sinful. We don't have
complete control of our thoughts, and thoughts help discharge
3. Self-imposed vows, promises, rules, etc., are invalid and
unacceptable unless they are grounded in accepted religious
principles or practices and even then are valid only if they are
reasonable, i.e., ones we can be expected to follow.
4. We are urged to refrain from engaging in "self-conceived
false religious practices," and rituals should be viewed this
way when they are done for religious purposes.
THE ABOVE 4 GUIDELINES SHOULD BE MIMEOGRAPHED
ALONG WITH THE FOLLOWING 2 QUESTIONS FOR DISCUSSION:
l. How does this information affect my OCD?
2. How can I use what I have learned?
22. What do you feel is your singular biggest success in your fight
towards recovery? What has been or still remains your
biggest struggle in working on your OCD and towards
23. How honest do you feel you have been with your therapist,
your group, and yourself regarding your
fears/obsessions/compulsions and how would you rate
a) Good (I talk about everything, and if something new arises
or I slip I bring it up immediately).
b) Partially (I tell about most).
c) Selectively (I avoid talking about the things I don't want to
work on yet).
d) Poor (I am guarded and do not talk about all of my OC
24. How has the way you have been handling things helped or
hurt you in your goal of living a symptom free life?
25. At one time or another, many of us have felt that we would
rather die than live with OCD so why wouldn't we rather do
exposure than have OCD?
26. Where would you like to be this time next year? What is your
part and/or what do you plan to do to get there?
27. What part of your life is affected by OCD that you have
chosen to not work on or ignore.
28. Do you consider yourself an optimist or a pessimist? How
does this attitude affect your working on your OCD?
29. What frightens you most about having OCD besides its
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