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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 unique personality
  • Unconditional love from your brother or sister

Sibling strengths

  • 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.

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, for being able to do things that your brother/sister cannot do, for not doing ‘enough’ to support your brother/sister, for having our own life…
  • 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 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
  • A non-reciprocal relationship – brother/sister is unable to express thoughts or feelings towards you or support you emotionally or practically in the same ways you support them

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

“It is so amazing to have the feelings and difficulties of being a sibling expressed and shared especially when I’ve spent most of my life dealing with these issues on my own” – Adult sibling

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.

Next steps

If you are a sibling, this may be the first time you have read about experiences similar to your own. You might need time to let these sink in. Some siblings want to do more to help themselves make sense of things, particularly if their experiences have been difficult.

Here are some suggestions that siblings have found helpful:

Books and films for adult siblings

Books

Non-fiction

Siblings: Brothers and sisters of children with disability
By Kate Strohm (2014); Wakefield Press

(Earlier version also available: Being the Other One: Growing Up with a Brother or Sister Who Has Special Needs’ by Kate Strohm (2005); Shambhala Publications Inc)

The Music Room
By William Fiennes (2009); Picador

The Sound of Turquoise
By Gill Gregory (2009); KUPress

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

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

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

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

Hamlet’s Dresser: A Memoir
By Bob Smith (2003); Simon and Schuster

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

Fiction
My Sister’s Keeper
By Jodi Picoult (2004); Hodder

Ted Talk

TEDxSanAntonio – Alicia Arenas – Recognizing Glass Children

Articles and blogs

Rhiannon Lucy Cosslett (2018)
‘I was a child carer – it made me who I am today’

Hannah Foulds (2020)
‘My sister’s learning disability and mental illness are not ‘a blessing’

Sibling stories

Click here to read the stories of other adult siblings.

Sharing your sibling story on our website has two benefits. It helps other siblings like you to feel less alone in their experiences, and it helps non-siblings to understand what it’s like being a sibling and why the charity is so important. If you’d like to share your story with us, email info@sibs.org.uk with roughly 500 words.


 

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