Siblings with no other brothers or sisters to share their perspective with often describe themselves as feeling like an only child, except without the attention an only child receives.

Siblings who do have another brother or sister don’t always get along with them. They might not share the same perspective on experiences growing up or share care tasks equally as adults. It can be difficult for siblings to talk with each other about the issues surrounding their disabled brother or sister’s care.

Both of these experiences look different, but can feel lonely in a similar way.

“As a child I spent a lot of time on my own, after school or in the school holidays, for example, whilst my parents were occupied with my brother and his care. Whilst I learnt to be self sufficient, it was a very lonely childhood in a lot of ways, and this has definitely shaped my personality, and negatively impacted my own mental health over the years.

Physically, as I didn’t have a sibling I could go to the same school with, or do most of the things kids enjoy with, or even just be with without any stress.

Emotionally, because there’s no more lonely feeling than being the centre of attention for the three years before my brother was born, then overnight changing to feeling I was virtually ignored, out of necessity due to my brother’s requirements and ill-health.

As a child and adolescent, I felt like I had to live a ‘double life’, pretending when I was out of the house that everything was fine at home, when it certainly wasn’t – and that’s a sad and lonely place to be.

As an adult, I feel lonely every time I see someone chatting in the pub with their sibling, or text messaging them about their day, or having nieces or nephews to make a fuss of. I have filled my life as best I can with my friends, my career, my pets, and the things I enjoy doing, but deep down that lonely empty feeling is always there.” – Adult sibling

Some adult siblings may have felt lonely during their childhood because:

• They may have spent less time with their parent(s), who were busy with care tasks
• They may have had less attention from parent(s). Even when they spent time together the focus of the conversation or the situation may have been centred around the disabled child’s needs and preferences
• They may have had to become quite self-sufficient at a young age on a practical level (e.g. making their own meals, organising themselves) or on an emotional level (e.g. not sharing worries, problem-solving by themselves) because a parent wasn’t able to help with these things
• They may have had to effectively be a parent to their parent(s), by providing emotional and practical support particularly during stressful periods of family life
• They may not have had the same social opportunities to build friendships. Their spare time may have been taken up with caring tasks; they may not have been able to bring friends home; they may not have been able to access the community as a family if it didn’t meet their brother/sister’s needs
• They may have worried about the future (and still worry about this as an adult) and had no one to discuss this with

Sibling’s whose brother or sister had a life-limiting illness, may have worried about a time when they will die and anticipated the loneliness they will feel. This may especially be the case for siblings who have no other brothers and sisters, or who don’t have a close relationship with their other brothers and sisters.

Siblings who have two or more disabled brothers or sisters, and who don’t have other non-disabled brothers and sisters, may have felt particularly lonely as the only non-disabled child.

The loneliness a sibling experienced in childhood can carry on into adulthood or it can re-appear in adulthood in a stronger way. For example, when an adult sibling feels lonely again, this may be heightened because of their experiences in childhood.

“My two sisters went to physio and I always wanted to go along. I saw them ‘playing’ on the colourful equipment thinking they were having so much fun and as I saw it, I was the only one who wasn’t invited” – Adult sibling

• Sibling carers might be providing emotional and practical support to their disabled brother or sister, or parent(s), or both. They might live with them, live close by or might be providing this support at a distance. They might have their phone on at all hours of the day and night in case they are needed at any time.
• Many sibling carers find they are the only one able to ‘step up’ and provide vital care to their disabled brother or sister when a parent is ill, a support worker phones in sick, or a service changes. This is because they may be the only other person who has the knowledge, experience and understanding of their brother or sister’s needs.
• Some sibling carers, particularly those whose parents have died, may be providing full-time care, support and advocacy for their disabled brother or sister.
• Some sibling carers don’t have a reciprocal relationship with their brother or sister. Some symptoms of certain conditions (e.g. mental illness, autism) may mean that a person actively rejects the one caring for them, whilst still needing this care. A sibling can feel very lonely providing care but receiving rejection.

“I find it really hard to connect with my autistic sister. If I died, she wouldn’t be sad about it. We don’t have a reciprocal relationship” – Adult sibling

“Sometimes I feel like all I have to talk about is my care issues, and I don’t want to bore my friends with those. I worry that they’ll just see me as negative and will drift away” – Adult sibling

• Siblings who don’t provide care and support for their disabled brother or sister or parents, can often feel lonely because they don’t ‘fit into’ services for family carers and might not feel like their feelings and experiences are valid.
• Many siblings feel guilty when they don’t provide care, and resentful when they do. Cycling between guilt and resentment can be a very lonely place as it’s not fully understood by peers who can’t appreciate the complexity of the situation and the feelings involved.
• Many siblings don’t have a close relationship with their brother or sister, or may be actively rejected by them because of the way certain conditions present (e.g. mental illness, autism).
• Siblings often feel lonely at different points in their lives when there are reminders of the brother/sister relationship they haven’t had. These might be small moments, such as seeing a friend joke around with their brother at a family meal, or bigger moments, such as a sister not being able to be a bridesmaid at a sibling’s wedding. This is sometimes referred to as ‘ongoing sadness or grief’. You can read more about this here.

“Please do all the things I didn’t do until relatively recently – talk to someone about how you feel, ask for help, write your feelings down in a diary – whatever works for you. The Sibs website is so useful in terms of practical and emotional advice, and can help put you in touch with other siblings – and for me that has been a wonderful help.“ – Adult sibling

• Tips to manage loneliness from Mind.org.uk
• How to cope with loneliness from YoungMinds.org.uk
• Advice on feeling lonely from the NHS
• The facts on feeling lonely from the Campaign to End Loneliness

• Join a sibling support group
• Coping with feelings (guilt, worry, anger, sadness)
• Download our eBook ‘self-care for siblings’
• Read about the experiences of other siblings
• How to find a counsellor
• Find books, films, articles and podcasts about sibling issues
• Find Help (frequently asked questions and answers)

You are not alone – reach out for support:

• To talk about anything that is troubling you, call Samaritans on 116 123 any time of day or night or email [email protected]
• Prefer to text? Use the ‘Give us a shout’ text service. Text ‘Shout’ to 85258 to talk about your feelings, at any time of day or night
• CALM. Phone line 0800 58 58 58, open 5pm – midnight. Webchat service here