Looking After Yourself

& Recovery

Siblings

An awareness of the impact on the siblings & how they may cope
All content provided by Dr Catherine Varnell – Clinical Psychologist – CAMHS with specialist interest in Siblings of people with eating disorders.

Siblings have been recognised in some research as an important resource in the support and recovery of a young person with an eating disorder. However, their role and wellbeing needs to be considered, as some research has made suggestions that siblings can be impacted by their sibling’s illness. This can include poorer reported quality of life, family relationship conflict, disruption to family mealtimes and outings, mixed and confusing emotions (e.g. anger, guilt, sadness. worry) at trying to understand the eating disorder and things their sibling may say or do, as well as impacting on their social and school life and time with their parent(s).

Siblings may also feel at a loss and helpless at times during the course of the illness, and some may try and take more responsibility for their sibling’s recovery (e.g. trying to get their sibling to eat, ‘monitoring’ their sibling at school, eating more food themselves than they wish to at family mealtimes, not doing sport/exercise any more themselves, not knowing what topics to talk about or not, declining social events to be there with their sibling etc); therefore, considering a clear role for a sibling may be important. Adolescent aged siblings have also commented in interview based research that they wish to know more information about eating disorders and the treatment, or may have misconceptions that they need some help demystifying, as well as having the option to attend some therapy sessions if this is possible (this can often work particularly well if the family is engaged in Family Based Treatment -FBT). There is also some research suggesting that there can be positive impacts for siblings from having experienced a brother / sister having an eating disorder; this included, feeling they have developed more empathy, a better understanding of mental health, wellbeing and need for nutrition, and sometimes feeling closer to friends and family members they feel they have been able to trust during this journey).

Siblings may cope with what they are experiencing in many ways – there is no one right way. Some may try to continue as before – doing their hobbies/clubs, seeing friends. Others may try to seek respite – staying out of the house, eating at a friend’s houses or other family members’ houses instead, using distractions and not talking about it. Others will want to find out everything there is to know about eating disorders and recovery. Some siblings may find it easier to talk to friends or professionals; others will be okay speaking to parents. Some research has indicated siblings may worry about adding burden to parents already coping with their brother/sister’s eating disorder and may not want to talk about how they are feeling, or express some of the more conflicted or negative emotion. This can sometimes mask how much awareness this sibling already has of the eating disorder or the impact it is having on them. Having permission to feel or ask anything and an outlet for what can be intense and confusing thoughts and emotions will be important.

What to tell the sibling?

It can be very hard to explain an eating disorder to your other child/children. You know them best and will know what they can process for their age. In general, it can be better to tell siblings ‘something’ rather than nothing at all (even if you believe they have no awareness as often siblings do know ‘something is up’). Siblings may also fill any gaps in their knowledge themselves from their imagination, stereotypes in society, things they’ve read or seen in movies, or misinformed reading they  have done online etc. In general it can be helpful to keep it simple and short, giving the sibling permission to ask anything about it and to let them know it would be typical to have mixed feelings and to be feel worried. It is essential to let the sibling know they are not to blame and that their brother/sister is not doing this on purpose. Beat explain eating disorders in the following way:

Eating disorders are serious mental illnesses that involve disordered eating behaviour… It is important, though, to remember that eating disorders are not about food. Instead, the eating behaviour might be a coping mechanism or a way for the sufferer to feel in control.”

Eating disorders are not contagious, and your sibling is not ‘crazy’… they are not all about appearance and weight – they are about much more than food. Eating disorders are serious mental illnesses, but they are treatable” (from Beat Carer Booklet)

Suggesting you will talk about this again with them at a later date can allow sibling the time to process this information and formulate any questions or worries. This provides a section on talking to younger siblings about eating disorders and questions children are likely to ask about this –talking to young children toolkit.

If you don’t know the answer to a question a sibling may have, that’s okay! You can explain you are learning too and you and the child could explore potential answers together in discussion, from books, online etc., or write this question down and agree to take it to GP or therapist/treatment team. Some questions don’t have simple answers – the question ‘why has my brother/sister developed this eating disorder?’ can be an example of that. It might be helpful to express that you know it can be hard to accept that we don’t have answers, but the important thing to remember at the moment is that the family know now what the illness is and are getting help to support their sibling’s recovery. Your other child/children may also need reassurance that this is not their fault (siblings argue, but the sibling may be worried that their arguments directly caused the eating disorder) and that just because their sibling developed an eating disorder it does not mean they will automatically also develop an eating disorder.

Other families have talked about ‘how’ to start these types of conversations and solutions have sometimes included using TV/Radio shows about eating disorders or young people’s mental health as conversation starters…”What do you think about that?”, “Do you have any questions about that?”, “That is what we think your brother/sister may be struggling with at the moment” etc. Alternatively, there are booklets and videos online about eating disorders which could provide the same avenue for starting these types of conversations. These include for example short video clips such as The Role of Siblings in Family Based Treatment (FBT).

How much to involve them? – Siblings role

As mentioned earlier, siblings can often feel helpless and not know what to do or say to help, or can take on too much responsibility, sometimes taking a parental role and role in re-feeding their sibling.

  • Make it clear to your other child/children that they are not responsible for ensuring their sibling eats, or for watching/monitoring their eating or activity levels at school (maybe making a family agreement of who they would go to if they were worried about their brother or sister during school).
  • Specify a clear role for them. Often their role is to be as before… for some siblings this may be watching TV shows with their brother/sister, looking at fun internet videos/memes together, talking about favourite bands and things that are happening at school or on past family holidays/events (shared memories) for instance. Younger siblings could give their best hugs or make their sibling laugh in whatever way usually works.
  • Siblings can also be offered the role of picking games to play or shows to watch before or after meals, as often in these time periods their brother/sister may need help to be distracted or place their attention on something else.
  • Parents have suggested they can feel they have to ask the sibling to eat more than usual to encourage their brother or sister to eat. You will still have the expectation of the sibling to eat meals and snacks as before, but they are not the ones with the eating disorder and as such it is likely (depending on age and other factors) that their brother/sister may have to eat more than them to recover to health.
  • If the sibling’s brother or sister does talk to them about the eating disorder, ask the sibling to talk about feelings, or good things/part of life how they used to be or could be once they’re recovered, more than food/diets/weight/body shape. If the sibling happens to upset their brother/sister, a simple apology and moving on from this can be helpful for the sibling to know is okay and reminded the eating disorder is not their fault and that there brother and sister does not mean/is not doing on purpose the thing they said or did that was hurtful.
  • The sibling has a role to talk to adults if their sibling says things that make them feel uncomfortable or scared.
  • Give permission for the sibling to take time out if needed. This may be going to a friend’s house or having dinner at grandparents instead one night. Siblings can often feel guilty about still living their life, but encourage them to still see friends, go to their music lessons, or clubs/hobbies. Parents have talked about being stretched practically, especially if driving one child to a club is around/after dinner time. Think about the network of people around you and them and try and take up their offers of help or ask for some assistance for this period of time (this can also model acceptance of support and can be useful for your child/children to see and learn from). Some families have said this included a family member, friend, or sibling’s friend’s parent taking them to the club instead, or helping them to become independent on the bus, someone else doing the shopping or batch cooking so it free some time for quality time with your other child/children.
  • Siblings can often feel their role is to keep secrets for their sibling/family – this can add feelings of shame / burden worrying about what they can say to whom. Some families have come to joint agreements about what they are sharing about the eating disorder and helped the sibling practice this (e.g. role play a conversation with the sibling’s teacher, or with wider family members etc.).
  • Siblings can sometimes think it is better for them to keep their feelings / needs quiet to escape burdening their parent(s)/family further. Parents often remind siblings, their role is not to ‘grow up’ all of sudden, or to keep their parents from worrying. In fact, siblings may be relieved to hear that actually their parent(s)/family may be more worried by not knowing how they are feeling/what is going on for them and do wish for them to talk to them openly.
  • Ask the sibling about whether they would like to be included in any of the treatment sessions / appointments. In treatments such as FBT their attendance is often encouraged (but understood they may have time out for exams, important things happening in their lives). Confidentiality is important as the sibling and their brother/sister will need to be clear and trust that what is said in sessions is private and not to be shared among classmates for example. If for whatever reason the sibling cannot be part of the treatment, it may still be useful to ask whether the sibling would like a chance to speak with the family’s GP, school counsellor or  the treatment team about eating disorders, how they are feeling/coping, or to ask any questions they have etc. Often professionals can accommodate a one-off session or phone call to do this. If not possible, the BEAT website can be good resources for siblings/carers or local young carers associations.
  • If siblings want to, but are worried about joining sessions, there are some videos you can access on the Young Minds website about CAMHS and/or about the FBT approach on by going to the Maudsley Parents website.

The NHS Lothian CAMHS Eating Disorder Development Team has developed a booklet for siblings which you download called ‘What Can I Do To Help? Self help pack for siblings of a person with an eating disorder’. This includes eating disorder education, clarifies some myths and terminology, as well as outlining  how they can help their brother/sister, things to say/not to say, and how to cope with their own feelings.

You can also downlaod or print off: ‘Top 10 tips for siblings of someone with an eating disorders (adapted from eatingdisorders.org.au )’.

Hints and tips for supporting the sibling and their wellbeing

Many of the ideas above will also help support the sibling and their wellbeing, but below are more ideas that may be helpful for some families. This list will not be exhaustive.

  • You know your other child/children best and when (no perfect time) / what’s appropriate to tell them… Remind and remind them they are not to blame and that their sibling isn’t doing this on purpose.
  • Tell them something. They will know something is ‘up’ and more likely to worry / fill in the gaps incorrectly themselves… Ask what they already know?
  • Brief, matter of fact, age appropriate information (see handout on talking to children about eating disorders/answering questions), give time/space/repetition for them to process this.
  • Give them permission to ask you any questions about eating disorders. Introducing a worry box / question lists / regular times for chats, or texting can be helpful mediums to encourage this. You could also guess some questions and say… “It would be natural to wonder X, and what I’ve learned is Y”. An open communication climate is key.
  • Look stuff up together if you don’t know the answer. Use TV/radio shows, booklets, websites, videos as conversation starters about eating disorders/mental health… Often siblings may find it easier to talk when not facing one another (e.g. when in car or watching TV etc.).
  • Give them permission to feel any feeling (and model talking about feelings and seeking support). Help them label and validate feelings… it’s okay to cry, it’s okay to feel sad/worried and angry, it’s very hard to understand and stay calm, it would be natural to feel confused.
  • Explicitly, let them know you want them to talk to you, this is not an extra burden. In fact you may worry more if they just keep it all to themselves. If you feel you cannot provide this at certain times, could another adult in the family they trust be assigned the role of asking how the sibling is feeling/checking in with them?
  • Be honest. This is serious, their sibling will need a lot of support (potentially hospital appointments, from parents/family, time off school). Be honest about what this means for them, it will be harder for you to do certain things with them, but that you (or someone else) will protect that time or activity (only making promises you/others can keep will give the sibling some certainty amongst potential chaos).
  • ‘Use’ other people (grandparents, aunts/uncles, friends, your child’s/children’s friend’s parent(s) ) – what strengths do these people have? It can be hard to accept no one can do it all alone all of the time – can others do practical things… shopping, batch cooking, driving siblings to their hobbies/activities, having meals out with them if they want this, driving lessons etc.).
  • Still celebrate birthdays. It’s okay if you or the sibling wants a cake for their birthday.
  • Your other child may take on a parental role or feel helpless… as discussed earlier it may be helpful to develop a clear role for them  – to act/be ‘ordinary’, to do stuff with their sibling like before that’s not too energetic, to just be their brother/sister, bring schoolwork home etc… Remind them of what they used to talk about or do with their sibling as they may feel they don’t know any more (a vent about school, TV shows, cinema, games, cute animal videos on YouTube, hugs etc).
  • Be explicit with what is not their role. You do not expect them to reefed their sibling, count calories, monitor their sibling’s activity, input, bathroom habits etc.
  • If a sibling comments on food/body shape/weight, one way of dealing with this is to thank them for caring so much about their sibling, that it’s our parental role to re-feed their brother/sister, and redirect/reiterate their role positively – “I’d really appreciate it if you could pick a good radio show/game for after dinner.”
  • Make agreement about ‘rules’ for school – they aren’t a ‘spy’ or don’t need to start having lunch with their sibling at school lunchtimes. Who would they turn to at school if they are worried? Some schools would have child/young person planning meetings (CPM / YPPM) to discuss how to support the sibling/family during this time.
  • It‘s okay if your other child/children sometimes needs space or some time out, some meals out the house, to continue/act as normal – this is their respite, distraction. Encourage them to not cancel friends/sleepovers/hobbies as it is not their job to mind their sibling. Relaxing / having something else to focus on for short times is good for them.
  • Discuss whether they would like someone to talk to (outwith their family/friends). This could be their GP, school counsellor, local counselling, FBT therapist, CAMHS team involved etc).
  • Look after yourself. There is no ‘perfect’ way to manage this, nor are you a superhuman. If you also need some professional support please speak to your GP or the treatment team supporting your child/family.

Further supports for siblings

Here are some ideas of supports for the sibling that includes self help booklets and reading, but also organisations and websites, and what some of the options are for professional supports. Click on the links to read more or visit the websites:

Further reading / useful websites for parents/carers

If you as a parent or carer wish to have something to read or look at online here are some ideas:

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