The needs of adult siblings

The experience of having been raised with a disabled brother or sister can deliver real advantages in adult life. Siblings of disabled people can be very mature, self -confident, independent and patient. They also can be very concerned for the welfare of others, more sensitive to humanitarian efforts, and have a greater sense of family closeness. Growing up with a disabled person may instil a greater level of understanding and development in siblings. They may develop excellent leadership skills, especially in areas where understanding and sensitivity to human issues are important.

It is important that we acknowledge and value these gains (for many) and at the same time recognize that these may have come at a cost and that many siblings have challenging emotional and practical issues to deal with.

The majority of adult siblings who contact Sibs really want to know that they are not alone with the feelings and experiences that they have. It is often a great surprise to them that they have found an organisation for siblings, and usually the first time they have told anyone about having grown up with a disabled brother or sister. This is usually a great source of relief.

The main issues affecting adult siblings are:

Unresolved issues from childhood
All of the issues that affected siblings during their childhood – lack of attention ignorance and isolation –see the Needs of young siblings - can remain unresolved in adult siblings and emerge at different stages of their lives. For example, when they have children of their own or following bereavement. Adult siblings can still feel jealous when their parent puts the needs of their disabled brother or sister first.

Impact on life choices
Sibs’ experience suggests that some of adult siblings’ choices about their lives can be significantly affected by their childhood experiences – examples of these are choosing a life partner who will be comfortable with their disabled brother or sister,
being drawn towards careers in the care sector, and making choices about further education and where to live.

Impact on physical and mental health
It is the experience of Sibs that the majority of adult siblings who have been in touch with the organisation have expressed a range of physical and mental health problems, such as anxiety and depression and neglecting their own physical health.

Lack of knowledge and information
For some adult siblings the lack of knowledge and understanding that prevailed during their childhood can be extended into adulthood. It is not uncommon for adult siblings to lack appropriate information, for example around genetic issues, which can be a source of anxiety to them. Many adult siblings who are in caring roles, often lack information about what support they are entitled to and what services are available for their brother or sister.

Isolation
The isolation that many siblings experience in childhood can extend into adulthood with related problems such as an inability to be open with others about their experiences of growing up with a disabled brother or sister. It is common for adult siblings to cry when they eventually discuss their circumstances with other adult siblings.

Continued caring role
The practicalities of devoting significant amounts of time to caring for a disabled brother or sister can continue throughout adult life. When parents grow old and less able to care themselves, there can be additional pressure on the siblings to increase their level of care, with corresponding repercussions for the sibling’s own lifestyle. The biggest concern that adult siblings report, is worry about is who will care for their disabled brother or sister when their parents are no longer able to care - due to old age, illness, and death. Adult siblings can experience triple responsibilities – towards their own children, towards a disabled brother or sister and towards older parents.