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Who is this eBook for?

‘Self-care for siblings’ has been written by Sibs for adult siblings in the UK who have grown up with a brother or sister who has a lifelong disability.

Types of lifelong disabilities might include spina bifida, cerebral palsy, mild/moderate/severe or profound and multiple learning disabilities, Down Syndrome, Williams Syndrome, Apert Syndrome, Cornelia de Lange Syndrome, Autism Spectrum Disorder, Asperger Syndrome, Rett Syndrome, Mucopolysaccharide (MPS) diseases, Fabry disease and related diseases, a Syndrome Without A Name (SWAN), genetic disorders, Cri du Chat Syndrome, a life-limiting condition, Fragile X syndrome, Tuberous Sclerosis and any other lifelong physical or learning disability.

“Thank you for acknowledging the role of adult sibling carers. Although I will always care for my sister I didn’t truly acknowledge that this is and should be a valued role in society – once I stopped being a ‘young carer’ I didn’t feel like I could use the term ‘carer’ since I don’t live in the same home and have moved on with my own life. You have validated the role and allowed me to acknowledge that my experience is different from a lot of people including my friends and partner but that it’s also a huge strength. I hope other people who aren’t in a carer role, and relevant services, can benefit from reading this book, as much as adult sibling carers can.” – Adult sibling 

How can this eBook help me?

We hope that this eBook helps you to:

  • Recognise your sibling experiences
  • Take care of yourself
  • Have a choice in the role you play in your brother or sister’s life

“I just wanted to write to say thank you so much for putting the ebook together. I have been reading it on and off for a few weeks, using it more as a guide when I start to feel guilty or stressed about something. I’m an adult carer for my younger brother, in both an unpaid and paid role (I’ve been part of his PA team for a few years now as trying to balance a full time job and helping my Mum to manage his care was so difficult) but I also just had my own little boy, he’s 10 weeks old. Due to COVID I am stepping in even more than usual and was really struggling with the juggle of everything, and this book came along just at the right time. I’ve spent a lot of time talking with my Mum, (more than we ever have in my life!), and have found a balance that is working really well at the minute. It has genuinely helped me a lot, so I really wanted you to know how useful I have found it. Thank you again!” – Adult sibling

Why is self-care important for me as a sibling?

It’s likely that you have experienced a lifetime of your needs coming second (or third, or fourth) to other people’s. For this reason, it can be particularly hard for siblings to meet their own needs (such as to get enough rest, to do something they enjoy, to say no when they need to). But self-care is not a self-indulgent luxury. It is an absolute necessity.

“I really feel thankful to see a book that recognises so many of the challenges and difficulties I have/am experiencing as a sibling of a brother with Autism/severe learning difficulties and is nonverbal. As I have been a continuous Carer from my early teen years till present and having experienced a lot of challenges along the way, it was refreshing to see that I am not alone, I am understood and moving forward I can get further support for my caring responsibilities. Really wish I had this book sooner. Thank you so much for this ebook Sibs!” – Adult sibling

What’s included?

  • The most common topics and questions we hear from siblings
  • Ideas for self-care
  • Tips and experiences from other siblings

“The ebook is wonderful. It’s done the trick! My two adult children spoke for 2 1/2 hours to each other on the telephone about their childhood which they’ve never done before. My daughter said it has explained so much about herself. And it’s answered so many questions for my husband and I who feel as if we’ve come to the end of a very long exhausting journey since our disabled daughter died 3 years ago” – parent of two adult siblings

What’s not included?

This eBook is about you and your experiences. It is not about the care and support of your disabled brother or sister. This is why it doesn’t cover practical topics about their care, such as mental capacity, managing finances and getting a care needs assessment. If you need information on these topics, have a look at our guides for adult siblings.

“It means a lot to me that this guide is for adult siblings and that it acknowledges how childhood issues often go unresolved and affect us as adults. It feels like there is this unspoken assumption that being an adult means I am okay and I don’t need support, and this guide challenged that assumption and made me feel heard.” – Adult sibling

Chapters include:

  • Being a sibling
  • Your feelings
  • Your mental health
  • Childhood experiences
  • Thinking about the future
  • Your relationship with your parent(s)
  • Your relationship with your disabled brother or sister(s)
  • Having your own children
  • Your own family life
  • Being a sibling carer
  • Siblings and work
  • Bereavement
  • How to find a counsellor

“I just really like this from the first chapter: “If it helps you to have a second reason, remember that you also need to put yourself first so that you can be there for others.” As a sibling, it infuriates me when people say to be strong and take care of myself for the sake of others. The fact that Sibs understands this to be a secondary factor and not the main reason for self-care is so validating. Thank you for making this point.” – Adult sibling

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We are the only UK charity dedicated to the needs to siblings of disabled children and adults. If you can, please consider making a donation so we can continue to provide support to siblings.