How do patients respond to support groups such as those at HSS for lupus, rheumatoid arthritis, and myositis? Do patients with mild disease get upset seeing the severe cases?

Ask the Expert


Roberta Horton, LCSW, ACSW 
Director, Department of Social Work Programs
Hospital for Special Surgery

Those who come to patient support groups are self-selected. Their primary motivations seem to be the desire (1) to learn more about management and prognosis of their illness; and (2) to meet other people in similar situations in order to reduce feelings of isolation and share common concerns, which can reduce anxiety and raise self-esteem.

Patients are apprentices in the management of their own illness. In addition to learning from their physicians and other health professionals, they want to learn from their peers' life experiences. By "comparing notes" on the impact of the illness, they are able to place their own knowledge and experience in context. Some find mentors through the group, while others provide mentorship. However, although we provide health professionals both as speakers and opportunities for peer discussion, it is made clear that what is transmitted is general information, not medical advice, which should come only from individual consultation with a professional.

A significant body of research has demonstrated the positive impact of support groups on people with chronic disease, reducing their sense of isolation and improving their quality of life. For some, the group experience provides great feelings of relief. "Finally, I'm not alone," is a common reaction. "Here's the one place where I can say anything and it won't be considered imagining or exaggerating because these people have it too." That they will be validated for what they are feeling is an important issue. Further, although the Internet has provided a cyber source of information about these diseases, there is a high that comes from human contact that can be seen in the faces of people who come to support group meetings.

For some, of course, there can be increased anxiety, because they may meet others whose illness or impairment is more severe, and they worry whether that is their future. However, as social comparison theory teaches, many people who encounter others in worse condition feel appreciative that their illness has not gone that route.

Further, a great deal of the impact of the group depends on the interaction of the group members and the skill of the group facilitator in assuring a non-judgmental environment of active listening. At HSS, we consider it critically important for the facilitator, whether a health professional or a trained peer, to make it clear that no two people have the same experience of illness and, therefore, treatment must be individualized.

In addition, we require that prospective participants, whether patients or family members, initially register by having a phone conversation with the group leader, who helps them put the group in context. Particularly for the very newly diagnosed, it is important for them to talk in advance with the facilitator - or the physician or a therapist - about how it will feel for them to be in a room with other people with this illness. Despite these caveats, for most it is a very positive experience.


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