The Sibling Voice

By Helle Thorning, M.S., C.S.W. & Ellen P. Lukens, M.S.W., Ph.D.

Siblings of people suffering from severe mental illness have seldom had their voices heard. Siblings have been left alone, silenced, and with no one to listen to how mental illness has influenced their lives. As stated by Mona Wasow, mental illness has a rippling effect. Like throwing a rock in the water, ripples reverberate outwardly and mental illness touches the lives of parents, grandparents, uncles, aunts, friends and siblings.

Siblings are clearly attached to one another, and the sibling bond plays an important role in our development. Siblings look for each other as models, friends and competitors throughout life. Over time, this relationship changes as we move on to other intimate relationships. Yet, the sibling bond is continual and we look to each other to validate feelings and experiences. Unique to the sibling relationship is that we share common genetic and social heritage, early childhood experiences in the family and have a common cultural milieu. Who else knows about the family trips and what went on in the back seat?

With the onset of mental illness in the family there often is a disruption of the sibling bond. As the onset of serious mental illness generally occurs in the late adolescent or early adult years, siblings often have close relationships with a brother or sister before illness strikes. With the eruption of mental illness, siblings experience confusion, stress, fear for their sibling and for themselves, disruptions in the family and profound sadness and pain for the ill sibling.

In spring of 1996 a first sibling conference was held entitled "Behind Closed Doors." The conference was planned jointly by siblings, parents, consumers, and mental health professionals working for the NYS Office of Mental Health in the capacity as Patient and Family Education Coordinators in State Psychiatric Centers. The objective for the planning group was to work together to address the needs of siblings. At the conference siblings shared their stories about mental illness among their brothers, sisters, and families, and with their frustration about the mental health system.

During the conference a survey was distributed to the sibling participants to gain more insight about the impact of mental illness on their lives. Most of the respondents to the questionnaire reported significant subjective impacts associated with having a mentally ill sibling. When asked how much they felt stigma had affected them, 72% reported experiencing stigma from the moderate to the extreme range. Most of the participants reported experiencing moderate to high levels of burden. A majority of respondents (85%) felt that to a moderate or higher degree their family life revolved around their ill sibling. Just over half (55%) had moderate to extreme worries about their ill sibling. Finally 83% of the respondents indicated that the treatment system was inadequate in responding to their ill sibling.

Clearly there is a lot more to understand about siblings experience of mental illness within their families. In 1998, the writers of this column received a grant from NARSAD to further research the impact that mental illness has on siblings and to assess their needs.

In addition, the partnership of consumers, siblings, parents, mental health professionals and researchers formed a NAMI group called NAMI-CARES and we are now in the beginning phases of planning the second conference for siblings which will take place in May 2000.

For more information about the Sibling Research Project call (212) 543- 5652.

For more information about NAMI-CARES and The Sibling Conference write Susie Hirsch, President NAMI-CARES, 610 West 110 St. #3D, New York, NY 10025.

http://www.newyorkcityvoices.org/siblings.html