Adult siblings and loneliness
Being a sibling of someone with a lifelong disability can be a complex and challenging experience. Siblings often feel lonely when they are the only person advocating for their disabled brother or sister’s needs, when a parent overlooks their opinion or when a well-meaning friend doesn’t understand what sibling life is like. Many siblings grow up not knowing there are other people out there with similar experiences, but it can really help to know that you’re not alone.
Do you need urgent help? Click here to ‘Get help now’ (from Mind, the mental health charity)
Reasons why siblings may feel lonely
Siblings have a unique perspective within their family:
- Many siblings have only known a life that centers around the care and support of their disabled brother or sister. Whereas a parent may have had the comparison of having a life before and life after having a disabled child, a sibling doesn’t have this unless there is a large age gap.
- A sibling is usually in a similar age bracket as their disabled brother or sister, giving them a peer perspective on their lives that isn’t shared by parents.
- A social worker goes on maternity leave, the learning disability nurse retires, the care home closes down and another re-opens. Whilst relationships with professionals and services all naturally change over the years, a sibling is often there for life. A sibling will mostly likely have the longest standing relationship with the disabled person, beyond the death of parents and the changes in services.
“Siblings are a lost group. We are accustomed to existing in the shadows of someone we love who has more urgent needs.” – Adult sibling
Having more brother(s) and sister(s)
Siblings with no other brother or sister(s) 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 them. They might not share the same perspective on experiences growing up or share care tasks equally as adults.
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
Being a sibling carer
- Sibling carers might be providing emotional and practical support to their disabled brother or sister, or parent(s), or both. They might 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 incase 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.
Being a carer can be very isolating because of the lack of support from services, the lack of value of the role in society and the lack of acknowledgement from peers who don’t fully understand the depth of the relationship and why a sibling choses to be involved. Sibling carers hear comments like “But he’s not your responsibility?” and “Why don’t you step back?” from well-meaning friends who don’t understand the needs, history and connection between a sibling and their disabled brother or sister.
“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
Siblings who aren’t carers
- 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 understand by peers who can’t appreciate the complexity of the situation and the feelings involved.
- 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
Coping with loneliness
- Acknowledge how you feel. Loneliness feels much harder as a sibling when we tell ourselves that we shouldn’t be feeling it! We might think that somehow we’re doing life ‘wrong’ if we feel lonely or that other siblings are coping better than us. This just isn’t true. Start by accepting that you feel lonely and that this is a normal feeling to have.
- Join a sibling support group. Meeting other siblings who just ‘get’ what sibling life is like can significantly reduce how lonely you feel. All the groups are friendly and will be glad to welcome in a new member, so if you’re unsure about going along – do give it a try! Click here to find out more and sign up.
- Read about the experiences of other siblings. We have a fantastic collection of stories generously shared by siblings across the UK and an eBook filled with sibling tips and experiences too. It can be a huge relief to read something and think ‘Me too’. Sharing your story can also relieve feelings of loneliness too – email 500 words to firstname.lastname@example.org and we can add this to the collection.
- Keep the number in mind. How many other adult siblings do you think there are in the UK? 5000? 10,000? It’s 1.7 million. 1.7 million people in the UK have grown up with a brother or sister who has a lifelong disability. Remember that number when you’re the only person advocating for your brother’s care or when your friends’ parents seem to have so much more time to help out with the babysitting than yours do. You are not alone.
- Use books, films and podcasts to help others close to you understand what sibling life is like. Many siblings would love their partner or best friend to see things their way, but haven’t found the right way to bring this up. When you find a film or a podcast that you identify with, share it with people close to you and tell them why it matters. Having something that they can ‘see’ will help them to understand a little more. You can find our favourites here.
- Make your sibling identity known with the professionals in your life that are supporting your mental health, for example, your GP, a counsellor, a university tutor or supportive colleagues at work. Being a sibling of someone with a lifelong disability is part of your identity, just like any other part. Print out a page of Sibs website like this one, highlight the parts that you identify with and pass this on to the professionals that know you. You deserve to have the whole of yourself seen and known and this includes your sibling experiences and the impact they have had.
- Be kind to yourself. Feeling lonely can feel painful. It can feel exhausting. If you were in physical pain, you would do something about it. If you’re in emotional pain, this needs time and attention too. Carve out time, even if it’s just five minutes a day to listen to your favourite song, to do something that is just about you. Because you matter, in your own right.
“Reading books about other siblings has really helped to validate my own experiences. I feel much stronger” – Adult sibling
“Before I started going to a sibling group, I felt completely alone and felt that no one understood what I was going through. After meeting like-minded people it really lifted me, and encouraged me as I had been feeling very down and isolated.” – Adult sibling
More about loneliness
- 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
More support from Sibs
- 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)
I need urgent help
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@example.com
- 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 (for men). Phone line 0800 58 58 58, open 5pm – midnight. Webchat service here
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.