Shared experiences
As a sibling who has grown up with a disabled brother or sister, you might struggle to explain to others what sibling life is like (and they might find it difficult to understand, too). How has your life been different to others? What are the positives of being a sibling and what are the difficulties? At Sibs, we recognise the ways that being a sibling may have shaped you as an adult, the qualities and skills you may have gained, as well as the significant challenges you may have faced in life.
What is it like to grow up with a disabled brother or sister?
Hear more about the experiences of siblings in the video below, which celebrated Sibs 20th anniversary in 2021.
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
- Enjoying your brother or sister’s unique personality
- Feeling loved by your brother or sister
Positive impact on other relationships
- Sharing humour and feeling closer to your other siblings, parent(s) or grandparent(s), as a result of your shared experiences as family members to your disabled brother/sister(s)
- Having insight into the human condition and empathy with others – many siblings are thoughtful and caring friends, partners and colleagues as a result of their sibling experiences
Sibling strengths
- Having skills and knowledge developed through your sibling experiences, in areas such as psychology, health care, social care, parenting, teaching, communication, behaviour management, organising, campaigning….
- Bringing the above skills to your work, education, volunteering, friendships, family life
- Advocating for disabled people
- Influencing service provision for disabled people, families and children
- Appreciating your own heath, opportunities and life
- Being competent in dealing with practical tasks and great in an emergency
Read more sibling strengths, written by the National adult sibling support group.
“The siblings of special needs children are quite special. Absolutely accepting and totally loving, from birth. Someone who is different mentally, and has a different way of seeing the world, is a wonderful trait. It’s a trait I wish there was another way of getting, but there isn’t. And it does involve a degree of not having it fantastically easy.” – Sally Phillips
Difficult experiences
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
- 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
Difficult feelings
- 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
Care issues
- 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.
Read more about being an adult sibling carer
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
- 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 parents 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)
Relationship with your brother or sister
- 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 may experience many more complex feelings from grief and sadness, to relief and guilt. Read more on our page about adult sibling bereavement
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
- Feeling as if your identity is very tied up with ‘being their sibling’
“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
“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
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:
Meet other siblings
- 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
Read books, watch films and listen to podcasts about siblings
Hearing other siblings’ stories can help you feel less alone and help you understand your own perspective too.
Take a look at these:
We’re grateful to the siblings in our community who have contributed to our own growing collection of sibling stories too.
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 [email protected] with roughly 500 words.
Speak to a counsellor
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
Give yourself space to work through things by yourself
- 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
Use your sibling strengths
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.
Feedback
Sibs would like to thank all the adult siblings on our reader panel who generously shared their time and experiences to help develop this page. Interested in joining our reader panel? Click here to find out more.
What do you think of this page? Drop us a line at [email protected] or fill in this feedback form.