FAQ - Your own health and wellbeing

You’re not alone. We hear many siblings who tell us they put up with their back problems or haven’t been to the GP about their anxiety, because in comparison to their sister who has regular hospital admissions for heart problems, these issues can feel much smaller. This can be an ingrained habit for some siblings, perhaps something that started in childhood because of the way that parents saw these issues too. But it doesn’t have to be this way. Here’s our advice:

• Compare yourself to yourself. What is ‘good health’ for you? What could you improve? What are you ‘putting up with’ that you shouldn’t have to?
• Ask yourself this question: ‘When I don’t go to the GP about my anxiety, who benefits from this?’. The answer is no one
• Many siblings unconsciously wish that they could give their health to their brother or sister, that they could ‘share out the good health evenly’ if this were possible. If you feel this way, acknowledge it, and remind yourself that you would if you could, and you can’t. And not resolving your own health issues doesn’t gift more health to your brother/sister
• If you feel like you’re strongly affected by this issue, consider having counselling to explore it further. Read our advice on how to find a counsellor
• Join a sibling support group or Facebook group to meet others who understand what sibling life is like

“Growing up with a disabled sister meant that my parents worried a lot about her health, and while I’m sure they didn’t mean for this to happen, I started to feel bad about my own health – like survivor guilt, almost. I think my eating disorder was directly influenced by the environment I was in and the messages I received. It was part self-punishment but also a way of proving that I had needs, and I wasn’t always “okay” like other people seemed to think” – Adult sibling

You’re right, there’s a lot to think about. When an adult sibling finds Sibs they often say “I never knew there was a charity for siblings!” and feel really surprised to learn that they have needs too. They might also feel a huge sense of relief, as if part of a jigsaw puzzle is slotting into place. Growing up with someone who has a lifelong disability will shape who you are, in the same way that any experience does. You might find it helpful to explore this more:

• Read about the positives and challenges of being a sibling
• Download our eBook, ‘Self-care for siblings’
• Read real-life experiences from other siblings

Take this a step at a time, as it might feel overwhelming to read it all at once. You might also find it helpful to write or draw about your experiences, talk to a trusted friend or join a sibling support group. You can also connect with siblings on our private facebook group, #Siblife.

• You can join one of our friendly online peer support groups for adult siblings. Find out more and sign up here.
• Chat with others on our private facebook group for adult siblings, called #Siblife
  

Guilt is one of the most common feelings that siblings tell us they experience more than their peers. For siblings, guilt generally falls into these four categories:

• Guilt that relates to other people’s values. For example, you feel guilty that you haven’t spent as much time with your brother as you think your parents would expect or want you to
• Guilt that relates to your own values. For example, you feel guilty that you don’t invite your sister to larger family events, because family is an important value to you
• Feeling guilty about your thoughts or feelings. For example, you feel guilty for having uncaring thoughts about your brother/sister or guilty that you resent the impact your brother/sister’s disability has had on your life and opportunities
• Survivor’s guilt. This is a term generally used when you feel guilty that you survived a traumatic event when others died. However, many siblings identify with it in relation to their brother or sister’s disability. For example, you might feel guilty that your brother/sister was born with a disabling condition and you weren’t (this can be especially heightened for twins) or guilty that you can do or have things your brother/sister can’t, whether this is day to day things like going to the cinema or bigger things like having a family of your own

Here are some strategies to cope with each type of guilt.

Adult siblings can worry about a whole host of things such as the future, being able to cope with care tasks, genetic issues, their parents’ health, and the wellbeing of their disabled brother or sister. These worries are real and valid, but when they merge into a large mass of worries it can be difficult to know where to start and how to tackle them.

Learn how to cope with worry as a sibling.

Anger is a natural response to feeling threatened in some way. Siblings can feel angry and resentful about many things, such as not having the care and the opportunities they needed in childhood, having to hide their feelings and having to put their needs to one side – sometimes daily.

Many adult siblings feel dismissed and not listened to by service providers. The feelings of being dismissed or undermined can lead to strong feelings of anger especially when they are worried that their brother or sister’s safety is at risk or if they themselves are at risk of losing income as they are having to provide care.

Anger can be a useful emotion to help us identify problems, protect ourselves and give us a boost of energy to challenge something we’re not happy with. However, sometimes anger can happen more frequently than we can manage or can lead us to do things in a sudden moment that we later regret.

Find ways of managing anger as a sibling.

Siblings can experience an ongoing and chronic sadness for the loss of the things they haven’t been able to have in life, as a result of their brother or sister’s disability. Siblings who recognise these losses don’t undermine their brother or sister’s life, or the positive aspects of their relationship either. Feelings of sadness for what a person doesn’t have, can exist alongside feelings of appreciation for what they do have.

It’s common for siblings to feel sad:

• For the sibling relationship, activities and shared experiences they have missed out on, because their brother or sister isn’t able to do certain things or be a certain way (“My brother wasn’t happy for me when I got engaged – he didn’t understand”) or because the opportunities weren’t there (“There was no support in our local area, so my sister was sent to a residential school miles away”)
• For their brother/sister and the challenges and discrimination they have faced as a result of their disability (“What did my brother ever do to deserve this?”). If your brother/sister has experienced abuse or neglect this may have impacted you too. Read about dealing with trauma after abuse
• For the parts of their childhood they have missed out on, because they have been so involved with their brother or sister’s care (“I spent my weekends as a teenager changing my older sister’s nappies. I couldn’t have friends round”)
• For the attention or bond they didn’t have with their parents (“I became self-sufficient very early on because my Mum just didn’t have time for me”). Some siblings use the term ‘glass child’ or ‘glass child syndrome’ to describe the experience of feeling invisible during childhood

Sadness in a sibling’s life can be ongoing, and they might recognise this as ‘ongoing grief’. Grief is often associated with the term ‘death’, but it can be helpful to associate it with the term ‘loss’. As a sibling reaches another milestone – a new job, a birthday, the birth of a child – they may be reminded of how these events are different for them to their peers and feel a renewed sense of loss, each time.

Find ways of managing sadness as a sibling.

Being a sibling of someone with a lifelong disability can be complex and lonely at times. 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 don’t realise they’re lonely at all, because they’ve never had the chance to look at this part of their lives or put words to it. Even with supportive friends, family, and full lives, their sibling experience can remain unseen, leading to a sense of loneliness that can be hard to name. This page shares some of the common ways siblings experience loneliness, and offers ideas for understanding and coping with it.

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 (for men). Phone line 0800 58 58 58, open 5pm – midnight. Webchat service here
  

Some siblings live with mental health conditions like stress, anxiety or depression for a long time – too long, in fact, because they feel like it’s an inevitable part of their lives. It doesn’t have to be. There are a whole range of treatments and support available.

• We appreciate that in some areas booking a GP appointment can be really challenging, however we strongly encourage you to see your GP and talk through your symptoms. If you are a carer for your disabled brother/sister make sure your GP knows this too, as local support may be available
• You may also be interested in our advice on how to find a counsellor
• Apps like Calm and Headspace
• Find out more about mental health at mind.org.uk
• Search for support in your local area on the Hub of Hope website
• Some siblings find that reading more of the Sibs website helps reduce their anxiety as it helps them to feel less alone in their experiences. Download our eBook ‘Self-care for siblings’, read the real-life experiences from other siblings or read more about the positives and challenges of being a sibling.

Other related pages:

• Coping with feelings
• Dealing with trauma after abuse
• Adult sibling bereavement

Further mental health information and support:

• Anxiety UK
• Bipolar UK
• Beat eating disorders
• Mind
• OCD UK
• PTSD UK
• Rethink mental illness
  

This is a good question to ask, as all counsellors are different and it’s important to find someone you feel comfortable with. Read our advice on how to find a counsellor.

You are not alone in feeling impacted by this. As one sibling told us, “[The abuse] was like an explosion that rippled outwards – it affected us all”. As an adult sibling you may be a key support for your brother or sister through this very difficult time and it is important that you look after yourself too. Read advice for siblings on dealing with trauma after abuse.

Many people find it hard to take up and continue a healthy lifestyle and this can be especially challenging for siblings because of the competing demands on their time. But looking after your physical health is one of the best investments you can make in yourself – and it doesn’t have to be the most time consuming.

• Speak to your GP about any ongoing or new health conditions that are troubling you – don’t ignore them
• The NHS website ‘Better Health’ has some realistic and useful ideas to help you lose weight, quit smoking, get active and drink less
• Are you underweight? Read advice from the NHS on how to gain weight healthily. If you’re concerned your weight is a symptom of an eating disorder, speak to your GP and go to Beat eating disorders for more information and support
• You may be able to track your health progress on an in-built app in your phone, or using an app like MyFitnessPal
  

If you’re struggling with insomnia, talk to your GP about the treatment and support available.

Want to improve your sleep generally? Cognitive behavioural therapy (CBT) based programmes can help, even if you work shifts looking after your brother/sister.

• • In Scotland, you can access the Sleepio app (a CBT based 6-week programme) as this is covered by the NHS
  • Apps like Headspace and Wysa also include support with sleep

It’s common for siblings to worry a lot. If you feel that worry is impacting your sleep, read our strategies on coping with worry to try and resolve this.

More advice:

• The Sleep Charity
• NHS – Sleep advice