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Positive experiences

You may enjoy spending quality time with your disabled brother or sister in the role of sibling rather than in the role of carer, and you may have positive memories of times you have spent together. You may have been able to use the skills and experiences you have gained in your work and family life.

Meaningful sibling relationship

  • Enjoying time together
  • Having a shared family history
  • Taking pride in the achievements and life satisfaction of your brother or sister
  • Finding enjoyment in your brother or sister’s quirky ways
  • Unconditional love from your brother or sister

Unexpected opportunities

  • Having developed skills and knowledge through your sibling experiences in areas such as psychology, social care, parenting, teaching, communication, behaviour management, campaigning….
  • Bringing the above skills to your work or family life
  • Advocating for disabled people
  • Appreciating your own heath and opportunities
  • Having insight into the human condition and empathy with others
  • Being competent in dealing with practical tasks
  • Influencing service provision for disabled people, families and children
  • Sharing humour with your family about some of your unusual experiences together

‘Since I joined you (and received your regular newsletters and emails) it has reminded me that I am also allowed to accept that I had difficulties growing up with a sibling with a disability.  It is a very valuable organisation and I’m very grateful for all the work you continue to do – to raise awareness and make change. Thank you for allowing me to say, “it was tough for me too”.’ Adult sibling

Difficult experiences

The following are regularly reported to us by adult siblings who contact Sibs.  If you are a sibling, this may be the first time you have read about difficult experiences similar to your own. If you need to talk to someone about this please contact us.

Emotional isolation

  • Not knowing that adult siblings have many experiences in common
  • Never having met and spoken to another sibling before
  • Not being able to share your sibling experiences with family or friends

Difficult feelings

  • Resentment about the impact of disability on childhood and life choices
  • Guilt for feeling anger or resentment
  • Overwhelming feelings of sadness and loss
  • Depression and/or anxiety
  • Jealousy of parental attention to your brother or sister
  • Feelings of shame and secrecy about your brother or sister’s disability
  • Feeling unworthy of getting attention in your own right

Care issues

  • Worry about what will happen with regard to future care
  • Caring for your brother or sister or helping parents with care
  • Trying to juggle your own responsibilities towards your children and your work, as well as care for your brother or sister, and often an elderly parent too
  • Not having enough information about support for carers or how to access services for your brother or sister
  • Making sure your brother or sister is treated with dignity and respect in hospital
  • Wanting to make sure your brother or sister has a good quality of life and is safe

Relationship with parents

  • Resentment that a parent cannot go out for the day with you, help you with your own children, or make you the focus of attention on a special occasion
  • Feeling that your brother or sister still comes first all the time, even in conversation
  • Difficulty in talking to your parent/s about the future
  • Conflict with parent/s over care issues such as clothes, medication, age appropriate social activities, behaviour management
  • Anger towards your parent/s that you have not been able to express
  • Resentment that parent and other family members have made assumptions about your role in future care, for example, that your brother or sister disabled person will live with you
  • Feeling obliged to provide support and help but not really wanting to do that
  • Feeling the need to achieve for your parent’s sake
  • Providing ongoing emotional support for parent/s

Relationship with your brother or sister

  • Chronic sorrow for the loss of the brother or sister you would like to have/have had
  • Bereavement following the death of your brother or sister, even if it happened in your childhood
  • Loss of the relationship with your brother or sister if he or she went to live in a residential setting in childhood
  • Having to be your brother or sister’s main friend and companion
  • Anger towards your brother or sister that you have not been able to express
  • Having to help your brother or sister deal with parental loss

Your own future and potential

  • Worry about having a child with a disability or chronic illness
  • Concern about introducing a new partner to your family
  • Feeling you have to make difficult choices between your own needs and those of your brother/sister and parent
  • Feeling that your obligations to family limit your work, relationships and lifestyle

Unresolved childhood issues

The issues that may have affected you during your childhood such as having less attention and feeling isolated, not understanding your brother or sister’s condition or being bullied at school, can remain unresolved in adulthood. They can re-emerge at different stages in your life, for example following bereavement or having a child of your own. You may recognise some of these in Needs of young siblings

Write about your sibling experiences

Research indicates that writing about a traumatic event or ongoing life issues seems to be very effective at boosting wellbeing in people – maybe this is why there are so many books about people’s experiences.

Get a notebook or journal – and each day spend a few minutes writing a diary account of what you think about it and what you feel about it. Write about how it has affected you as a person. Writing helps you get your thoughts and feelings into an order and helps you notice things that may help you. Don’t force this though – it will emerge of its own accord. The morning may be a good time to do this – so the thoughts have a place to go before work and interacting with other people. You will need privacy for this, as you may cry sometimes.

You can also share your experiences on our adult sibling forum or share an experience with others on this site.

Books and films for adult siblings

Non fiction

Mary McHugh (2003)
Special Siblings: Growing Up with Someone with a Disability
Brookes Publishing Co

Kate Strohm (2005)
Being the Other One: Growing Up with a Brother or Sister Who Has Special Needs
Shambhala Publications Inc

Paul Karasik & Judy Karasik (2003)
The Ride Together:A Brother and Sister’s Memoir of Autism in the Family
James Bennett Pty Ltd

Rachel Simon (2003)
Riding the Bus with My Sister: A True Life Journey
Plume Books

Bryna Siegel & Stuart Silverstein (2001)
What About Me?: Growing Up with a Developmentally Disabled Sibling
Da Capo Press

William Fiennes (2009)
The Music Room
Picador

Gill Gregory (2009)
The Sound of Turquoise
KUPress

Karl Taro Greenfield (2009)
Boy Alone: A Brother’s Memoir
Harper

Bob Smith (2003)
Hamlet’s Dresser
SImon and Schuster

Fiction