Shared experiences of adult siblings

• 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
• Strong feelings of disconnection, as no one else seems to understand or truly ‘get’ what life is like for you
• Having spent years ‘bottling things up’ as there have been so few opportunities to share with people who really understand

Read more about adult siblings and loneliness

• Grief for the childhood you would have liked to have had
• 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
• Anger – at the situation you have been dealt, at services that don’t provide adequate care, at your brother/sister, at your parents…
• Feeling unworthy of getting attention in your own right
• Chronic stress or worry about your disabled brother/sister, in the here and now, and in the future

Bereaved siblings may experience many more complex feelings from grief and sadness, to relief and guilt. Read more on our page about adult sibling bereavement

• Worrying 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
• Being the only person who can ‘step in’ and provide emergency care
• 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
• Taking action on safeguarding concerns

Our adult sibling guides cover a range of topics from mental capacity and managing finances, to getting a care needs assessment and future planning. You can download them here. Read more about being an adult sibling carer here

• 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
• Sadness at seeing your parent(s) struggles
• 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 guilty spending time on your own life
• Feeling the need to achieve for your parent’s sake
• Providing ongoing emotional support for parent(s)
  

• Chronic sorrow for the loss of the brother or sister you would like to have/have had
• 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
• Trying to provide strong emotional support when you may have limited resources yourself
• Guilt at being able to do things that they can’t do, but would love to do
• Anger towards your brother or sister that you haven’t been able to express
• Having to help your brother or sister deal with parental loss
• Not being able to directly contact your brother/sister to make plans with them, but having to go through a carer or staff at a supported living setting
• Feeling extra pressure to make special occasions go really well and be joyful/memorable for your brother/sister (particularly if your brother/sister has a life-limiting condition)
• Having to be the person who has difficult conversations with them, whether this is about personal matters such as sex and relationships, or about future planning, death and bereavement
• Feeling pressured by society to have a close relationship with your brother/sister, when you may have very little connection at all
• 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 brother or sister’s needs or behaviour changing as they get older
• And much more

Bereaved siblings feel the loss of their relationship with their brother/sister, whatever their age at the time that they died. Read more on our page about adult sibling bereavement

• 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
  

• Join an adult sibling peer support group to meet others who just ‘get’ what sibling life is like. The groups discuss a huge range of sibling topics – from emotional topics like guilt and boundary setting to practical topics like mental capacity and future planning. Bereaved siblings are welcome at all groups
• Join #Siblife our private Facebook community for adult siblings. This is a great place to chat with others about a range of sibling topics, ask a specific question and gather opinions, and to hear stories from others and offer your unique experiences too. Bereaved siblings are welcome at #Siblife
  

Many siblings find that the experience of growing up with a disabled brother or sister has shaped who they are as an adult. Being a sibling may have impacted the way you approach life, how you think and feel about things, your job, where you live and your relationships. Some siblings may have had traumatic experiences growing up too. Talking doesn’t change what has happened but it can change how you feel about it. As an adult, this can help you going forward and stop you from being held back by habits or feelings that might be limiting how you live your life. Read our advice on how to find a counsellor

• Write about your sibling experiences through short journal exercises
• Have a look at our advice on coping with feelings
• Read books and watch films for siblings (see list below). Many siblings tell us how much they resonate with ‘Siblings: Brothers and sisters of children with disability’ by Kate Strohm
• Download Sibs eBook ‘Self-care for siblings’ which expands much more on this webpage and provides tips and experiences from many other siblings too
• Some siblings find being part of Sibs reader panel helpful, to reflect on their own experiences whilst helping other siblings too
  

If this is the first time you’ve recognised the skills and experiences you’ve gained as a result of being a sibling, think about how you can put them to use in your life. Think broadly across your friendships and relationships, education and work, caring and parental responsibilities, volunteering etc. Read more about sibling strengths here

Non-fiction

Brother. Do. You. Love. Me
By Manni Coe and Reuben Coe (2024); Canongate

Sunday Times Bestseller. Waterstones non-fiction book of the month, March 2024. Shortlisted for Book of the Year at the British Book Awards.

“Reuben, aged 38, was living in a home for adults with learning disabilities and struggling to accept that he had Down’s syndrome. Depressed and in a fog of anti-depressants, he hadn’t spoken for over a year. Increasingly isolated, cut off from everyone and everything he loved, Reuben sent a text message: ‘brother. do. you. love. me.’ When Manni received this desperate message from his youngest brother, he knew everything had to change. Together they began an extraordinary journey of repair, rediscovering the depths of their brotherhood, one gradual step at a time.” – Canongate

The Year of the Cat: A Love Story
By Rhiannon Lucy Cosslett (2023); Tinder Press

“When Rhiannon fell in love with, and eventually married her flatmate, she imagined they might one day move on. But this is London in the age of generation rent, and so they share their home with a succession of friends and strangers while saving for a life less makeshift. The desire for a baby is never far from the surface, but can she be sure that she will ever be free of the anxiety she has experienced since an attack in the street one night? And after a childhood spent caring for her autistic brother does she really want to devote herself to motherhood?” – Tinder Press

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.

“Siblings tells what it is like to grow up with a brother or sister with a disability or illness. The siblings of children with a disability are often the overlooked ones in families struggling to cope. Kate Strohm, a sibling herself, bravely shares the story of her journey from isolation and confusion to greater understanding and acceptance. She provides a forum for other siblings to describe their challenges and provides them with strategies to make sense of their experiences.” – Wakefield Press

Read our sibling review.

Riding the Bus with My Sister: A True Life Journey
By Rachel Simon (2013); Grand Central Publishing

“Rachel Simon’s sister Beth is a spirited woman who lives intensely and often joyfully. Beth, who has an intellectual disability, spends her days riding the buses in her unnamed Pennsylvania city. The drivers, a lively group, are her mentors; her fellow passengers are her community. One day, Beth asks Rachel to accompany her on the buses for an entire year. This wise, funny, deeply affecting true story is the chronicle of that remarkable time. Rachel, a writer and college teacher whose hyperbusy life camouflaged her emotional isolation, had much to learn in her sister’s extraordinary world.” – Hachette Book Group

The Music Room
By William Fiennes (2009); Picador

Costa Book Awards shortlist 2009.

“William Fiennes’ childhood was one of imagination and curiosity, bounded only by the horizon he saw from the roof-tiles of his ancient family home. His older brother Richard, known for his towering presence, his inventiveness, his great passion for Leeds United, and his suffering due to severe epilepsy, was an adored and charismatic figure in his life. Years later, eager to understand his brother’s mind as fully as the ancient trees and secret haunts of his own journey towards adulthood, William Fiennes has written a profoundly moving account of his home, his family’s care, and above all, of Richard. The Music Room is a luminous testament to the miracle of consciousness and to the permanence of love.” – Picador

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

“Gregory creates a space through The Sound of Turquoise to explore her childhood memories, of the relationship with her disabled brother Andrew and her Grandfather Alexis. She uses Meg, the protagonist, to enable her to revisit her experiences which perhaps were too painful to address directly. In doing so, it gives the story a slightly fictional less biographical feel.” – Read more in our sibling review.

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

“In this literary tour de force, Karl Taro Greenfield, the acclaimed journalist and author of China Syndrome, tells the story of his life growing up with his brother, chronicling the hopes, dreams, and realities of life with an autistic sibling” – Harper

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

“McHugh, a freelance writer and editor, weaves together her memories of life with her [learning disabled] brother with reflections, research, and interviews with other siblings of those with disabilities.” – Abe Books

Please note: The author uses the ‘R’ word to describe ‘learning disability’ in this book. The term is not used maliciously. We still recommend this book, as many siblings relate to the content.

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

“A sister and brother of an autistic man describe in words and cartoon illustrations the story of their sibling’s life.” – Abe Books

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

“The true story of a boy whose life was saved by literature, Hamlet’s Dresser is a portrait of a person made whole by art. Bob Smith’s childhood was a fragile and lonely one, spent largely caring for his [disabled] sister, Carolyn. But at age ten, his local librarian gave him a copy of Shakespeare’s The Merchant of Venice, and it transformed him.” – Abe Books

Please note: The author uses the ‘H’ word to describe ‘disability’ in this book. The term is not used maliciously. We still recommend this book, as many siblings relate to the content.

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

“A compassionate and accessible guide on living with and caring for a developmentally disabled sibling.” – Da Capo Press

Fiction
A Little Life
By Hanya Yanagihara (2022); Picador

Winner of Fiction of the Year at the British Book Awards. Shortlisted for the Booker Prize. Shortlisted for the Women’s Prize. Finalist for the US National Book Award for Fiction.

“In her 2015 novel A Little Life, American author Hanya Yanagihara tells, rather beautifully, of a sibling relationship between Willem and the late Hemming. Their Icelandic father and Danish mother emigrated to the US from Sweden and raised the boys in Wyoming, Hemming, who died as a young adult, was severely disabled and pre-verbal. Writing from Willem’s point of view, Yanagihara describes Hemming with tenderness, and conveys Willem’s deep love for his brother. The episode only takes up a couple of pages in a 750-page novel but it made an impression on me. Yanagihara notably focusses exclusively on Willem’s feelings, treating them as a separate entity unconnected to the parental relationship with the disabled child. A Little Life was a huge bestseller on both sides of the Atlantic, and was turned into a West End play.” – review by Sara, adult sibling

Summer Brother
By Jaap Robben, translated from the Dutch by David Doherty (2021); World Editions

Longlisted for the 2021 International Booker Prize. Winner of the 2022 Vondel Translation Prize (UK). 

“Thirteen-year-old Brian lives in a trailer on a forgotten patch of land with his divorced and uncaring father. His older brother lucien, physically and mentally disabled, has been institutionalized for years. While Lucien’s home is undergoing renovations, he is sent to live with his father and young brother for the summer. Their detached father leaves Brian to care for Lucien’s special needs. But how do you look after someone when you don’t know what they need? How do you make the right choices when you still have so much to discover?” – World Editions

Read our sibling review.

My Sister’s Keeper
By Jodi Picoult (2018); Hodder

“In all thirteen years of Anna’s life, her parents have never given her a choice: she was born to be her sister Kate’s bone marrow donor and she has always given Kate everything she needs. But when Anna is told Kate needs a new kidney, she begins to question how much she should be prepared to do to save the older sibling she has always been defined by. So Anna makes a decision that will change their family forever – perhaps even fatally for the sister she loves.” – Hodder

Goodbye Tsugumi
By Banana Yoshimoto (2002); Faber & Faber

“Maria, the narrator, explores her cousin Tsugumi’s relationship with the rest of her family and the wider community. Tsugumi has a lifelong debilitating physical illness and the two cousins have been bought up as siblings, making this book feel so relatable. The frustrations of challenging behaviour, the constant worry of relapses and the different perspective a disabled sibling gives you are all explored in this novel. I felt that Yoko, Tsugumi’s older sister, mirrored many characteristics that I see in myself too and it was empowering to see her character’s strength celebrated. Yoshimoto’s softly nostalgic tone made it feel like a friend chatting to me in cafe about experiences which feel entirely relatable. I recommend this book if you want an easy-going, heart-warming read that finally makes you feel heard.” – review by Freya, adult sibling

Sleepovers (2008) and The Best Sleepover in the World (2023)
By Jacqueline Wilson; Young Corgi

Whilst these books are aimed at 7-10 year olds, we’ve included them here as many adult siblings will still relate to the content from their childhood. The main character Daisy, has a physically disabled sister, Lily, who uses Makaton to communicate.

Many adult siblings find it helpful to read children’s books, as it can help to ‘fill the gap’ of something they didn’t have (but would liked to have had) as a child. Take a look at our children’s booklist here.

An Irish Goodbye (2022)

“On a farm in rural Northern Ireland, estranged brothers Turlough (Seamus O’Hara) and Lorcan (James Martin) are forced to reunite following the untimely death of their mother (Michelle Fairley). But when the pair discover an unfulfilled bucket list belonging to their late mum, their pained reunion takes an altogether different course.” – IMDB

Lorcan has Down’s syndrome.

Click here to watch a trailer (IMDB).

Wonder (2017)

“Based on the New York Times bestseller, “Wonder” tells the incredibly inspiring, heartwarming story of August Pullman. Born with facial differences that, up until now, have prevented him from going to a mainstream school, Auggie becomes the most unlikely of heroes when he enters the local fifth grade. As his family, his new classmates, and the larger community all struggle to discover their compassion and acceptance, Auggie’s extraordinary journey will unite them all and prove you can’t blend in when you were born to stand out.” – IMDB

Part of the story is told from the point of view of the sibling.

Click here to watch a trailer (IMDB).

Mission to Lars (2012)

Documentary.

“Kate and Will Spicer’s brother, Tom, has Fragile X Syndrome, the most common form of inherited learning disability. He is also a massive fan of Lars Ulrich from Metallica. They made a promise to Tom that they would get him to meet Lars. Tom’s dream is their promise. Together they went on a Mission to Lars.” – IMDB

Click here to watch a trailer (IMDB).

The Black Balloon (2008)

“All Thomas wants is a normal adolescence but his autistic brother, Charlie, thwarts his every opportunity. Will Thomas, with the help of his girlfriend, Jackie, accept his brother?” – IMDB

Click here to watch a trailer (IMDB).

What’s Eating Gilbert Grape (1993)

“A young man in a small Midwestern town struggles to care for his [learning disabled] younger brother and morbidly obese mother while attempting to pursue his own happiness.” – IMDB

Click here to watch a trailer (IMDB).

Tommy Jessop Goes to Hollywood (2023) 
60 mins. Available on BBC iPlayer until July 2024. Click here to watch (TV licence and log in needed).

Best Interests (2023)
Four-part drama series (60 min episodes) available on BBC iPlayer until May 2024. Click here to watch (TV licence and log in needed).

There She Goes (2023)
60 min special episode. Available on BBC iPlayer until May 2024. Click here to watch (TV licence and log in needed).

Kelle Salle (2024)
‘I was just 7 years old when I saw my brother laughed at for his disability’

Emma Dooney (2023)
‘My brother is the reason I don’t want kids even though he’s my favourite human’

Courtney H. Van Houtven (2022)
‘Standing up for my sister’
Please note: This article discusses death and bereavement

Amy Julia O’Connor (2022)
‘National Siblings Day 2022’.
This blog article focuses on Amy’s experiences growing up with her sister Sophie who has Hurler’s Syndrome.

Jo Whiley (2022)
‘What my disabled sister taught me about love and loyalty’

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

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

We’re grateful to the siblings in our community who have contributed to this growing collection.

Take a look at the stories in some of these categories:

• How being a sibling has shaped me as an adult 
• Sibling strengths
• Watch sibling vlogs/videos 
• Sibling poetry

Or find the whole collection here.

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.