Post-Polio Health (ISSN 1066-5331)
Vol. 4, No. 4, Fall 1988
Margaret E. Backman, PhD, New York, New York
Leaders of post-polio support groups often feel frustrated that a large majority of those on their mailing lists do not come to the group meetings. More important, many leaders fear that these nonattenders are manifesting "serious denial" and may not be doing what is in their best interest. Although in many cases denial may be operating, it is not necessarily self-destructive and often is an appropriate coping mechanism – putting aside disturbing thoughts and allowing one to move on with one's life.
The low level of participation in support groups is not endemic to the post-polio population. Research with those with other medical conditions suggests that a minority of people choose to attend group sessions.
Reasons for Leaving or Not Joining a Group
"It depresses me being with people who are sick." "I prefer not to dwell on my illness." "It reminds me of when I was in the convalescent home; I've had enough of that." These are only some of the reasons given for not wanting to be in a group. Individuals have different coping strategies, and they differ in their capability and need for self-care and information.
A certain amount of support and information is needed; however, some people may be getting as much as they can handle. "Information overload" can be as stressful as not knowing what is going on. Some people prefer to be informed about the timing and the nature of an aversive event, while others prefer to be distracted from knowing, particularly if the information would be threatening.
Matching the amount of information given to a person's preferred coping style seems to the the best strategy. "Confronters" show less stress when given the requested information, and "avoiders" show less stress when given only the minimum information needed to take care of themselves. Generally speaking, the best guide would be to listen to a person's request for information and support.
Some support groups move from being supportive or educational to a more psychodynamic mode, where participants are encouraged to talk about very disturbing feelings and memo larries. Many polio survivors would like to forget what happened to them. They also wish to delay thinking "prematurely" about the difficulties they may have to face in the future. Some are not ready to be confronted or to share their deepest fears - at least not "in public." They may be afraid that they will not be able to cope emotionally. Thus they avoid group meetings because they have no control over what might be said or asked of them. In such cases, avoidance or denial may be appropriate coping mechanisms.
Generally speaking, avoidance (or denial) is better than approach (or confrontation) if the situation is not in a person's control. If there is some possibility for control, however, a more direct approach strategy is better, because it allows the person to take advantage of opportunities.
Perception, however, plays a major role here. Polio survivors may feel that the present state of knowledge and treatment is uncertain and perceive their current situation as uncontrollable. They may feel that the help available is very limited, and discussion of their condition only stirs up what they consider to be unnecessary fear, anger, and frustration. By using avoidance and denial, they reduce their anxiety and possible depression.
For those who cannot tolerate group sessions, written material in the form of newsletters, educational pamphlets and books may be a preferred route for learning about the experiences of others and for obtaining information related to their condition. By this means they can have more control. They can choose to read it now, later, in small amounts, or never.
Those who are dealing with strong emotional reactions and those who need to remain in some control may find individual psychotherapy preferable to group participation. In individual therapy they can have more control over the pace at which they confront their fears and frightening memories. They can also maintain their privacy, something dear to them after years of hospitalization and medical treatment.
There are other reasons that may cause people to avoid support groups. For one, they may be getting emotional support elsewhere, from family, friends, professionsals or religion.
Factors related to the group itself may play a role. Some may not feel comfortable with the leader or other group members. For example, there may be those who blame all their life problems on polio and attend group sessions for emotional support independent of polio. The enormity of their emotional problems and their extreme neediness may interfere with the group processes, alienating and frustrating other members and causing them eventually to leave the group.
People who had polio when they were infants have concerns that differ in some respects from those persons who contracted the disease when they were adolescents or adults. The former group may have a greater need to find out what happened to them, since they were too young to understand or to remember. Now they hope to learn through the experiences of others.
Those who were older have more vivid memories of contracting the illness, of stays in convalescent homes and hospitals, of unpleasant experiences with "helping" professionals and treatments. They may not be so eager to relive these memories by talking about them with others.
The severity of disability resulting from polio may play a role in assimilation into a group. Some polio survivors were left with a less serious or less visible disability. They may feel they do not need the group support, whereas others may feel that those who are more disabled may not take their complaints seriously (and indeed this can happen in groups).
Also, being with those who are more disabled may be too frightening to those who have lived most of their lives with little or no disability and now are facing the possibility of becoming more seriously disabled.
Alternatives and Approaches for Support Group Leaders
- Recognize the differing needs and coping styles of polio survivors. Periodically survey your membership for their ideas and evaluations of your services.
- Be clear about the objectives of your group meetings. Remember group dynamics are not for everyone, and some may prefer one type of group format over another (support, educational, cognitive, behavioral, psychodynamic). Often the more homogeneous the group the better it functions.
- Make referrals for individual psychotherapy when you feel people may be harming themselves through "serious denial" or have other serious emotional problems. Do not be afraid of losing control by making outside referrals or sharing information. You will be respected for being well-informed and responsible.
- Conceive of the support group more broadly, perhaps as a network or a club with the support group being one part (including a speakers series, a newsletter, phone networking, a referral service for medical and psychological care). Some may not need your help right now, but should their situation change, they will know that le the services are there.