Collaborative Care New Maudsley Skills Workshops for Carers

Capsule for adult siblings - practical tips and useful phrases

These workshop capsules have been created from scenarios considered in previous workshops and are designed to help carers to review and reflect on specific areas that can prove extremely difficult. In this capsule we consider

both the emotional journey and practical tips for adult siblings

In this capsule we consider the following issues in the context of adult siblings:

Why are adult siblings important? Adult siblings’ emotions - ALVS, distress tolerance and building self-

compassion Lifecycle of eating disorders - complexities and challenges Stages of change model - useful phrases to connect with your sibling Considering the benefits of the eating disorder - understanding why your

sibling is reluctant to let go Animal metaphors - how do you respond to your sibling How adult siblings can encourage change Using ALVS to connect with your sibling Planning for change - one minute a day and baby steps Planning for change - restrictive eating Planning for change - introducing healthy behaviours Common difficult scenarios - in conversation with your sibling

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Why Include Siblings in Collaborative Care?There have been several studies into the role of siblings, although there has been very little actual support offered, especially to adult siblings who often feel unseen and unheard.A large online survey was undertaken a few years ago by Kym Advocates. There are videos of siblings talking about their experiences at https://kymadvocates.com/tag/sibling-support/In the survey 543 siblings answered 28 questions. Their age range was 9 to 70 years. The responders were 82% female, 17% male. Many reported it was the first time they had been asked about their experiences.Four key themes emerged from the responses:

1. Acknowledgement – siblings want to be seen and heard. Their experiences and emotions are important too. Just being asked “How are you doing?” would be a good step in the right direction.

2. Communication – siblings are often the first to notice, and then often get left out of the loop. In addition, siblings often feel they need to suppress their own issues as their parents have enough to deal with looking after the person with the eating disorder.

3. Knowledge and Skills – siblings reported that they could read up on eating disorders, but there was nothing specific for siblings in terms of skills. What to do and/or say in difficult situations. Often siblings would choose to say nothing rather than risk making things worse.

4. Therapy and Support – Siblings would like peer to peer support. Most carer support group are directed at/ dominated by parents. Siblings have different issues and a different role to play. They have a different relationship with their sibling who is ill. Their unconditional love is tested in different ways by the ED. Siblings recognise that sometimes they might need therapy to cope with the anxiety, depression and other difficulties that can build up when you are a sibling of someone with an eating disorder.

Siblings can help in so many ways. It is also crucial that siblings know they are not expected to be pseudo carers, and it is ok to opt out when things are just too difficult.

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Adult siblings’ emotions

In a New Maudsley workshop for adult siblings these are the emotions (highlighted below) they expressed feeling regularly and with varying degrees of intensity:

Anger Sadness Fear/ anxiety Shame

Strong (7-10) Furious Depressed Terrified Humiliated

Enraged Hopeless Devastated Defeated

Bitter Lost Paralyzed Judged

Moderate (4-6) Exasperated Lonely Desperate Guilty

Worried Isolated Threatened Sorry

Resentful Tearful Confused Regretful

Light (1 – 3) Annoyed Disappointed Uncertain Flustered

Irritated Unhappy On edge Uncomfortable

PLUS Pissed off Mildly anxious Distracted Occasionally down

These emotions may also be intermingled with unconditional love and unerring hope

The following discussion ensued in the workshop:

It is entirely normal for siblings to experience this array of feelings, and at times it can feel overwhelming to the extent that you start to feel numb, or simply zone out.

An eating disorder is an illness that seeks to disconnect family members, and the more disconnected family members feel, the more intense the emotional rollercoaster can become.

If family members can work together and keep calm then lines of communication with the sibling with the ED are likely to improve.

Being aware of your own emotions and learning to regulate them and self soothe is the first step towards being able to communicate more calmly with your sibling with the ED.

We talked through an example of how to acknowledge validate and soothe your own emotions. See the example of Mary on the next page.

Can you write your own version considering the main emotions you are feeling right now?

You might also like to watch this clip of two sisters talking about the younger sister’s eating disorder: https://www.youtube.com/watch?v=eHnegLI39Ac

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Exercise : Constructing a conversation with yourself and/or a fellow sibling or close friend around the emotions you are feeling:Example:Mary says “I feel terrified (8) that my brother Jake will never get better, and so guilty (10) that sometimes I just want to walk away from him. I am ashamed (10) to talk about his illness with my work colleagues and I worry they might judge me and my family. I find his illness so confusing and I get so frustrated at his behaviour. I hate the impact he has on my parents, and at the same time I feel that he gets all of my parent’s attention and that I get forgotten. It is ok most of the time because I know Jake is ill, but just sometimes it would be nice if somebody asked me how I was feeling! ”

Introducing ALVS (attend, label, validate, soothe)Attend – what physical sensations or behaviours or negative beliefs do you experience?Label – family members naturally feel a wide range of very intense emotions such as those listed aboveValidate – it is not at all surprising that all family members experience these emotions BECAUSE ………BECAUSE……. BECAUSE……..Soothe – through the workshops you will learn more about the illness and some new communication techniques such as ALVS. With practice you can become more able to identify and respond to your own emotions and those of your sibling. This helps everyone to tolerate the natural distress that comes when you, as a family are battling the eating disorder. It also helps family members to feel calmer and better able to communicate with each other.

Attend: I am feeling very tearful/agitated/distracted/sadLabel: I am feeling terrified, guilty and ashamed as well as lots of other confusing emotions.Validate: I am feeling terrified BECAUSE I fear Jake might never get better, and I am feeling ashamed BECAUSE I can’t talk openly about him, and I am feeling anxious BECAUSE I feel my work colleagues might judge me and my family. When you have a sibling with an eating disorder it is natural to have these feelings and it can feel overwhelming at timesSoothe: Despite all this I am still Jake’s sister, and I am determined to help Jake beat this. My love for Jake is unconditional and deep down he knows that. I also know that I need to take time out to re-energise. I am his sister not his mum and naturally that means I have a very different relationship with him. It is important to recognise that. There are things I might be able to say that my parents never could. That is a good reason to talk to other siblings in a similar situation and to share ideas. The more you can own your emotions and talk about them, the more likely it is that your loved one will follow suit. You will be role modelling emotional intelligence.

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Distress tolerance and learning to be compassionate with yourself - Constructing a conversation with yourself using LESS is more and ALVSConsider your physical responses to stressful situations, behavioural responses, negative thoughts about our ability to connect with your sibling with ED and the array of emotions that naturally follow.Listen – to your body and mind. What are the signs that you may need a break to re-energise?Empathy – be kind to yourself and acknowledge the challenges of caring having a sibling with an eating disorderSupport – who can support you when you are feeling vulnerable? What can they do for you? (practical, emotional, distraction)Self Confidence – build your self-confidence through self-reflection using the sibling version of ALVS described below.

You can construct a conversation being kind to yourself when you have felt that you have lost control.Example: I shouted at my sister and told her she was selfishTrigger : My sister was being really horrible to our mum, telling her she was useless and it was all her fault over and over. My mum got really upsetPhysical sensations in my body: My heart was racing, I had a lump in my throat, and felt an ache in my chestBelief/ negative thought: My sister is doing this on purpose and it is destroying our familyEmotions: Initially anger and then frustration, sadness, lost, alone, helpless

Self reflection using ALVS:Attend: I shouted at my sister and told her she was selfishLabel: Initially in the heat of the moment I felt anger and then later I felt frustration, sadness, lost, alone, helplessValidate: I felt that way BECAUSE my sister was being really horrible to my mum and BECAUSE I was feeling overwhelmed by the impact her illness has on our whole family. Most people would feel like that if they had to live under this shadow.Soothe: These are ways I can self soothe – breathing, meditation, cuddling the dog, having a hot shower. These are close others who can help me soothe – my other siblings, my best friend, other siblings from other families affected by eating disorders. They might distract me or give me a hug or help me to review and reflect on what happened and what I might do differently in the future.I am a good sibling and I am doing my best and that is good enough.

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Lifecycles of eating disorders

Draw your own version of your sibling’s journey thus far.

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For some adult siblings the first version is more relevant – maybe your sibling is a teenager part way through treatment. Consider how you can stand by your sibling through their treatment and after discharge. It is after discharge that they might be looking much better but feeling really fragile. Having a sibling who can acknowledge the challenges, and who understands the emotional rollercoaster, as well as providing light hearted distractions can be really helpful. Think about helping your sibling to start to do more and more normal activities (rather than trying to fix them or stop their ED behaviours). You know your sibling from before their illness and you are in a great position to help gently nudge term back onto a more normal developmental path.

For some adult siblings the second version is more relevant which illustrates an adult sufferer who might have had several in patient admissions, been treated as a day patient, an out patient and had long periods of no treatment. Indeed, there may be many more peaks and troughs than shown in the example above. Draw your own version and reflect back on your relationship with your sibling at each stage. What went well? What didn’t go so well? You could have a conversation with your sibling and ask her for her thoughts on what she found helpful. Ask her what she would find helpful in the future. If she can’t come up with any ideas, perhaps make a few suggestions – preferably a mix of normal life activities, (playing a game, watching TV, playing tennis, going out for a coffee) and what you can do to help when things are getting toxic.

Adult siblings can really help their sibling with ED to start to join in with normal every day age appropriate activities. Watch the video about the blue balloon and red balloon at New Maudsley Training Manual Worksheet 2.7 and 2.8 - YouTube Think about how you can help your loved one to reinflate their blue balloon.

Watch this short video that compares Empathy with Sympathy.Youtube: Search “Brené Brown on Empathy “

“Empathy fuels connections, sympathy drives disconnection”If siblings can empathise with the challenges of recovery from ED (represented by the very squiggly line in the drawings above) this can be really helpful.

Watch this video that helps you to understand the importance of listening - rather than rushing in with all the ideas of what to do next:It's Not About The Nail - YouTube

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The Stages of Change Model (Training Manual Worksheet 4.1)In simple terms recovery for your sibling involves a cycle of change that might look like this:

This model describes the process a person has to go through to make permanent change. It is a tool used in ED therapy and in many other therapeutic arenas. The boundaries are not clear cut, this is the general process which can be used as a guide. The stages are described in SBC on pages 70 -72.Pre-contemplation – Not seeing there is a problem (anosognosia) or seeing there is a problem, but not willing to change it. The sufferer may truly believe there is nothing wrong, or might be rationalising it in their own minds: ‘I have just been a bit stressed with work lately, I’m eating loads, honestly’. They may be genuinely confused about your concerns and feel threatened by your attempts to change them, remove ED and/or fix things that don’t need to be fixed. In addition, Edi might have experienced other parts of the cycle of change in the past and believe that all treatment will be ineffective because past treatment has failed. Precontemplation can become persistent and a difficult stage to break through.Contemplation – Understands there is a problem, but may still be ambivalent about change. Part of them wants to change, the other part is resistant. It could be that the balance is not weighted highly enough for change, or they are not confident enough in their ability for change. Likely to say one thing (‘I will eat’) and do another (not eat!).Preparation/Determination – The person has decided to change and is making plans. This can be a fragile stage. Action - Has made a start at making changes. This stage presents many difficulties for Edi and SMART baby steps within a series of carefully planned experiments is much more likely to yield some positive steps forward.Maintenance – Has started maintaining the action they decided on and are resisting relapse.Relapse – May be a momentary relapse or longer, but always an important chance to learn from mistakes. Relapse and re-entering the cycle at an earlier stage is possible at any point, and this is all part of the necessary change process. Going around the cycle is not a smooth clockwise movement. An individual might go around the cycle many times and move backwards and forwards between each stage. An individual

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might be firmly in action about one part of their recovery, but very much in pre-contemplation about another e.g. Sam was sticking religiously to his meal plan but could not see why he should reduce his excessive exercise routine.A more realistic model might look like this:

Consider the following:Q: Where are you as a sibling in the cycle of change?For example, you might be in

Contemplation – thinking about what you could do differently in the future that might be helpful

Preparation – planning specific experiments eg I might talk to my sister in a different way, I might distract my sister with specific activities, I might talk more with the rest of the family and/or close friends about how I am feeling, I might allow myself to take time off from my sister when it is all getting really toxic

Action – these are the things I am already doing that work well and I am going to do more of them

Relapse – everything has been so toxic lately and I feel I have no relationship with my sibling because of her ED. I am interested in learning ways to repair that ruptured relationship.

Q: Where is your sibling with ED in the cycle of change?She might be at different stages for different things. For example:

Precontemplation over reducing her exercise levels Contemplation about giving up a ritual around eating Preparation around introducing some fear foods into her meal plan Action over sticking with her current meal plan And inevitably there will be regular lapses and less regular more significant relapses.

Q. What problems might this lead to?

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For example, if you are in action and your sibling with ED is in precontemplation over something (eg you know she needs to reduce her exercise levels and are trying to persuade her, she is totally ignoring your efforts) then it is akin to talking Japanese to a German. The idea is you try to come alongside her to understand her position. This doesn’t mean you agree with her, it means you have empathy for her struggles. Once alongside her you can use motivational language to reconnect and help her to make her own changes.Consider these useful phrases and rewrite them in your own language:

Help me understand (perhaps be curious about what benefits she gets from doing so much exercise)

It must be tough (to know you need to reduce your exercise and at the same time exercise gives you so many benefits)

You have achieved so much (list some achievements) You are strong/ brave/courageous/determined in your battle with ED I have noticed that you are doing a lot of exercise and it must be frustrating for you

when you know that means you have to eat so much more I can see you don’t want to talk about this right now. Let’s go for a walk, play a game,

watch TV. You know I am here for you if you ever do want to talk. It must be so confusing when everyone is telling you to stop exercising, and exercise

is so important for you right now

This model of the cycle of change can help you to understand the importance of coming alongside your sibling and walking at a pace that is comfortable for them. Rushing someone who is not ready to change can send them further back towards pre-contemplation.

More examples of useful phrases when your sibling is resisting your attempts to help: It must be frustrating for you when everyone is nagging you (about your ED) It must be so confusing when everyone is telling you “you are so ill”, and you are

feeling fine I can imagine it makes you feel very lost and alone when it seems those around you

don’t understand the challenges you are facing I would be angry if I thought nobody was listening, nobody understood and nobody

cared about me. We really do care. Sometimes it is so difficult to understand and sometimes I simply

don’t know what to say.

Exercise: Considering why my sibling holds onto their ED with such determination. (Training Manual Worksheet 2.2)

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It often seems to families, that their loved one is stuck in a hole using the same tools over and over again that caused the problem to begin with. This can be difficult to understand.

Imagine for a moment that you are your sibling. You are not ready to let go of your eating disorder. You feel nobody understands you and you probably feel nobody is listening to you. What would you say are the benefits of holding on to your eating disorder?ControlEG Academically good – helps me focus

Makes me feel in control Makes me feel safe I get loads of attention Reduce anxiety Distraction from normal trials and tribulations of life I don’t have to take responsibility Numbs difficult emotions Habit My identity I am really good at it I feel invincible It is my way of coping The ED is my friend and the only friend who really understand me

If something gave you similar benefits would you really want to give it up without a fight?This exercise can help siblings to develop an appreciation of Edi’s ambivalence about change and agree that they would do things to get similar benefits, and that they wouldn’t want to let these things go. In individual therapy such as MANTRA patients are given exercises to make their mixed feelings about change more explicit by writing a letter to “Anorexia Nervosa, the (1) friend and (2) enemy. The same approach can be used for patients suffering from bulimia, or binge eating disorder.

Exercise: Interpersonal Relationships and the Animal Metaphors (Training Manual Module 3)

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Chapters 5 and 9 of SBC discuss the animal metaphors. SBC p63 summarises the potential pitfalls of these instinctive reaction to Edi.Watch these videos explaining the animal metaphors:New Maudsley Training Manual Worksheet 3 the animal metaphors - YouTubeSUCCEED Learning Chapter - Animal Metaphors - YouTubeConsider how you and other family members respond to your sibling. Can you recognise any of these responses:

a) What are the possible benefits of each animal response, and when might this response not be so helpful?

In the adult sibling workshop we talked about each animal in the context of being a sibling:

Kangaroo – very caring, but can be overprotective and suggests you don’t believe your sibling with ED can take responsibility for their own health. We agreed this was probably more likely to be a parent type response, rather than a sibling response.

Rhino – very logical and directive, but can come across as critical and judgemental, and suggests you are the expert. Especially if you often say “I think you should do xyz”. However this logical and directive approach can be really useful in many areas of life and in many workplace settings. Several of you agreed that siblings could easily become rhino like and you recognised this trait in yourselves. Remember there is no right or wrong way of communicating. The key is that if you find that something is not working, then think about how you could respond differently.

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Terrier – constant noise, energy and enthusiasm, very persistent, but can come across as incessant nagging. Some of you could relate to this.

Ostrich – sticking head in sand. Several of you agreed that sometimes you just need to take a break from the ED and that is ok.

Jellyfish – transparent emotions. Whilst it is good to talk about emotions, the flip side is that if you get very upset in front of your sibling with ED it can make them feel worse. Better to vent your anger, tears, frustrations with other family members or close friends. Several of you said you could recognise toxic situations when it all becomes a bit too much.

So if you find something isn’t working then think of the animal metaphors and try to identify – what is it about my response that isn’t working?

Then imagine a slightly different response based on the dolphin and St Bernard metaphors:

The dolphin approach is one of gently nudging and guiding – think if the pod of dolphins swimming along and one dolphin swims out into a danger zone. Somebody within the pod – perhaps a sibling – will swim alongside and gently nudge the dolphin in danger back into the safe area. At times you might swim ahead for a short while to show the way, and then come back alongside.

The St Bernard has a casket around it’s neck containing reviving brandy or similar. This represents your own toolkit of coping strategies. Looking after yourself is crucial, and many siblings find that having their own therapy sessions from time to time can be so helpful. At the very least having someone that you can talk to who understands the challenges of being a sibling. The St Bernard is a constant – always there in the face of any avalanche, dealing with any crisis/ toxic situation in a calm and compassionate manner.

Note: if you can be more dolphin and St Bernard like for five minutes a day, or five minutes when you see your sibling, it can start to make a big difference in your relationship.

How can siblings encourage change?

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Change is difficult for everyone, and this is amplified when there is an eating disorder in the family:The patient (Edi) sees many benefits from sticking with their ED behaviours, it has become their coping strategy. It helps them to feel in control and safe.The rest of the family fears that if they make changes it might things worse. Aesop’s fable of the sun and the wind helps us to understand how change often comes through a little bit of discomfort. The sun got the man to relax by being calm and warm, but the man didn’t take his coat off until the sun turned up the heat. The man felt a little bit uncomfortable and so made the decision to take his coat off.

As an experiment think of something you could do with your sibling this weekend, perhaps plan to play a game – “I know my sister likes Bananagrams”. You may find that the prospect of doing something different makes you feel a little anxious (completely natural to feel this) and it is helpful to think about the concept of reasonable risk using these questions:

What is the worst thing that can happen? She refuses to play We start playing and she gets into a tizz for some reason I might accidentally say the wrong thing and upset her

What is the best outcome? We have a really lovely game with lots of laughs and we get to remember all the

good things we used to do together before ED

What is the most likely thing to happen? She agrees to play and we have a nice game. It is a good step in the right direction to

doing more normal things with my sister.

Having thought about it like this, this “experiment” seems more achievable. Visualising and verbalising is always a good way to prepare yourself for doing something different!

Scenario : Using ALVS with your sibling – simple example around online shopping

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Mum suggests that Amelie would like it if her sister Fiona helped her do some online clothes shopping. Fiona is naturally very nervous about this prospect because in the past Amelie has been very upset about the fact that nothing ever fits her properly.

A conversation might go like this:

Fiona: Hey Amelie when shall I come round to the shopping?Amelie: I dunno you tell meFiona: Ok Sat AM

Sat AM - In Amelie’s sitting room, Fiona feeling a little bit anxious.Amelie: I can’t do this. It is too hard. Nothing is going to fit right anywayFiona’s natural response is to ask “ Why is it too hard?” We try to avoid using the word Why as it can sound a bit accusatory or judgemental or critical. In addition, it can easy to get caught up in a circular argument around food, weight and shape (FWS). The ED voice loves these arguments and both siblings can end up feeling exhausted and frustrated.

Alternative responseFiona: We know this is difficult (empathy), it’s one of those really tricky areas, help me understand what you are thinking and feelingAmelie: I don’t deserve to have nice things, I am a useless fat pig, clothes are never going to fit me. What’s the point?

Fiona might then use ALVS to come alongside Amelie and soothe her:Attend : Amelie I can see you are really tearful and body checking

Label: You seem upset and depressed and excruciatingly sad and frustrated (guess)Amelie: unusually long and honest account about her feelings (Fiona then uses reflective listening – repeat her words)

Validate: OK have I got this right, you are feeling depressed because you are worried about your changing body shape and you are feeling really sad because ……..and you are feeling frustrated because …… I would find that really hard

Soothe: (Hug, or take a break, distraction, positive sibling memory, options):Take a break -we can come back to this another time. Let’s go for a walk instead.Distraction - I know, we could just order some other items – shoes, jewellery, toiletries, scented candle, a game to play together.Positive sibling memory about shopping – do you remember when we went to Bluewater and I bought those hideous culottes – I thought I was so cool.Create options – how about we…………. (be careful not to say – I think we should as it is too directive)

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A good option for online shopping is to order 3 different sizes and at the same time have a conversation about how unreliable sizes are between brands. I always tell the story of buying three different Zara outfits on one day – three different sizes but they all fit me perfectly. Even within that one store the sizes are not consistent! The great thing about online shopping is that it is so easy to return things.Another good option is that you agree that you are both buying a range of things. It takes the pressure off and makes it more fun and you can have sibling banter around each other’s choices.

Can you think of other ideas?

ALVS is always useful whenever your sibling starts to get upset.

Planning for Change - the one minute a day story:A young couple in their twenties were really stuck because of the wife’s ED related rules and rituals. One of these was that they always had dinner at 10pm and it always lasted exactly two hours. She then woke at exactly 5am to go for a two hour run or bike ride before going to work.After months of trying to persuade her to have dinner earlier the husband decided to make this such a small step it would hardly make any difference. So, he asked his wife “Is there any possibility we could try to have dinner one minute earlier a day?”His wife agreed to try this one minute a day experiment. They didn’t manage it every day, but when they didn’t manage it, she was happy to talk about what had happened on that day to prevent it happening. She became much more aware of her feelings, her surroundings and things that might trip her up. After a few months they were having dinner at 8.30pm and she was so delighted at the success of this experiment she decided to reduce her exercise by one minute a day. She regained a much better quality of life and now this couple have two children.Success breeds success.

Planning for change - addressing restrictive eatingSiblings can help in this process of helping Edi to set herself SMART baby step goals.

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Example:Josie tells her brother Paul that she really wants to break away from all her restrictions around food, but she is finding it too hard. Paul tells her about the one minute a day story and wonders if together they might be able to break Josie’s goal down into more tiny steps. They could start with a blank piece of paper to come up with a list of possible options, and they could then use the anxiety hierarchy chart to make a plan.

Menu of options:

1. Do nothing, it is too difficult2. Just eat everything3. Try a new food periodically4. Make a list of fear foods and challenge one at a time5. Make a green list and an amber list and a red list6. Try something on my amber list first7. First try in a meal on my own because I don’t want to be judged or exposed8. Start trying to eat food made by one other person who I trust9. Buy the food first and then build up to eating it later on10. Plan to have a coffee and cake with a friend in a coffee shop11. Start now to build confidence to be able to eat a more normal Christmas Day lunch

with the family

Of course, these options are not all mutually exclusive. For example, you could start with 4 and 5. Whichever option is chosen, there are still the others to go back and try in the future.

The anxiety hierarchy chart can be a useful tool to break a bigger goal down into smaller baby steps.

Goal- To have cake & coffee with a friend in a coffee shop

Expected Anxiety

Actual Anxiety

Menu of Options:Eating cake in a coffee shop with a friend 99Eating cake at home 98Eating a small piece of a muffin at home 90Having a coffee with milk with a small piece of flapjack in a coffee shop

85

Having mint tea with a friend who is eating cake in a coffee shop

75 55

Having mint tea with a friend in a coffee shop 50 40By starting with a less anxiety provoking challenge, Edi starts to learn to tolerate anxiety, and so at each stage the actual anxiety experienced will tend to be less than the anticipated anxiety at the start of the experiment. There is no rush and your sibling might repeat one

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step many times before moving to the next step. They might add more intermediate steps. They might then surprise you and suddenly make several much bigger steps. Young people in recovery often report that once they had faced a few smaller anxiety provoking experiments, they were then able to move forward very quickly in certain areas.

Goal : eat a normal Christmas dinner with the rest of the family

Expected Anxiety

Actual Anxiety

Menu of Options:Goal : eat five foods on my amber list by ChristmasPotato, yorkshire pudding, bread sauce, red meat, glass of wine

99.9

There might be many more baby steps before reaching the overall goal

Roast potato experiment as for baby new potato 1.2.3. 50-90Eat a boiled potato with a tinsy bit of butter 80 703.Eat one baby steamed potato with my sister 65 402.Eat one baby steamed potato on my own 60 401.Cook a steamed baby potato for my sister and dish it up and sit with her

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Note: this is a huge step for Edi – to eat Christmas lunch with the family. Tread carefully and don’t push too hard. Christmas is about so much more than the food. Even if the goal is just for your sibling to sit with everyone for the Christmas meal whilst it being OK to eat their safe foods, that would be better than her not joining in at all.

Remember experiments don’t always work out as you hoped.

If something works well then keep doing it. If something doesn’t work out, then reflect on what went wrong. Perhaps it was just too difficult for everyone involved. Could you break it down into smaller steps? If not put it on the back burner for now and try another experiment.

A goal isn’t always about stopping an unhealthy or undesirable behaviour. It might be about introducing a healthy behaviour.

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Goal: incorporate healthy exercise into my weekly scheduleThis ABC analysis can be helpful:

Antecedent Establishing a healthy Behaviour

Consequence

Desire to achieve: Endorphins Feels good Healthy Social Habit

Regular sociable exercise EndorphinsFeels good Healthy SocialNeed to be careful not to become obsessive/ compulsiveBone health needs to be monitoredReasonable risk assessment is sensible

Reasonable RiskWhat is the worst thing that could happen?She might become obsessive again and this could trigger a relapseWhat is the best thing that could happen?Learn to enjoy exercise in moderation in a social settingWhat is the most likely thing to happen?If you think she would become obsessive don’t suggest this at this stageIf you think she genuinely wants to get back to a normal healthy social exercise regime it is worth considering.In the same way as in example one regular review and reflect conversations are invaluable

Menu of Options:

1. Try to be more flexible about timings (if she is rigid about that)2. Exercise together3. Music related activity4. Nice walks in the countryside (OS app)5. Tennis6. Golf7. Yoga

Possible Conversation : Amelia (who is a qualified yoga teacher) is trying to get back to yoga.

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“Amelia, I have noticed that you have been trying to get back into yoga and it seems to be a struggle. I have heard you saying things like you are not flexible enough, not strong enough, really weak. You have come so far and I know you worked really hard to break away from it being a compulsion. Now you just want to get back to the joy of yoga and I can see your confidence has been knocked. I would like to get better at yoga and I know that you could teach me so much and at the same time you could start to build up your strength.Let’s make a plan. Shall we ask to mum to join in?”

Common scenariosIn the one of the workshops, we brainstormed about how to respond to difficult situations. These are some of the examples:

Scenario One : Edi uses mum’s credit card to go shopping and it isn’t okCharlie described the scenario thus:When my sister Ali, age 24, goes shopping she takes my mum’s credit card. Mum feels she doesn’t have a choice as Ali wouldn’t go shopping if she didn’t have her mum’s card, and the greatest fear for parents of a loved one with a restrictive eating disorder is that she then wouldn’t eat. Charlie wishes Ali could buy her own food. Ali is working full time and so could buy her own food. Charlie tried to bring it up with his mum but she feels trapped into doing it. It always comes back to the fact that his mum is fearful that if she doesn’t pay, Ali will eat less.

Possible sibling conversation with AliCharlie : I don’t think it is fair that mum has to pay for all your foodAli: you hypocrite - you are happy to eat mum’s food.Note that if your sibling shuts down a conversation like this you have several options:

1) Just let it go2) Roll with resistance - you can come back to this another time3) Respond in a light hearted jokey way - OK I know I am happy, perhaps we should

both mend our ways. Shall we surprise mum and start buying more food ourselves?4) Think about how else to address this (see below)

Alternative possible conversation with AliCharlie: I notice that you take mum’s credit card to buy all your food and then you eat all your meals on your own. (developing discrepancy and gently suggesting that mum might prefer to eat meals with both Charlie and Ali)Ali: What’s your problem. It is the only way I can manage - Mum just wants me to eatCharlie: Do you think that is the only thing mum cares about?Ali: Well that is what she goes on about all the time

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Charlie: Of course, mum is concerned about what you eat. She also really wants your life to be so much more than about food. For example, she would love to be able to go clothes shopping with you.I would also really like to do more things with you. We used to cook together

At this point as a group, we created a wish list of sibling activities:Going on walking holidaysTalking about anything and everything (normal teenage/ young adult stuff)Talking as a sister - more normal everyday stuffGoing on bike rides, outdoor activities

Common FEAR if I talk to my sibling about outdoor activities it currently would feed into the exercise obsession, or it simply isn’t allowed because of the ED. Note that this is a common stumbling block and can be circumnavigated by remembering happy times in the past and looking forward to future times when joint outdoor activities might be possible, whilst also acknowledging it is not possible at the moment. For example:“Do you remember that holiday we had in the Lake District when Dad made us hike up that Tor and we were all moaning but when we got to the top the views were unbelievable. Then we raced back down to the pub. I know you aren’t allowed (able) to do outdoor activities like that at the moment and that must be frustrating (EMPATHY). I am so looking forward to the time we can make plans to do outdoor stuff again.” (BELIEF in recovery and helping your sibling to visualise better times ahead)

Going back to Ali conversation:Charlie: I know that at the moment we couldn’t go for a hike on the South Downs, how would you feel about making some nice meals together? Mum would love that. Ali: I’m too busy and I don’t have timeCharlie: Ok well maybe I will make a nice meal this week. Let me know when you do have time.

In this conversation sequence Charlie has given Ali the message that change is possible and that he is happy to help when Ali is ready. He has also indicated he would love to be able to do more normal sibling activities with his sister in the future. Think of it as drip feeding pennies into a piggy bank.

Scenario Two My sister is very smart and she might see straight through this style of language:

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“Joe stop using this f…ing psychobabble with me!”Of course, this can be off putting. It is worth persevering as one of you recounted her sister saying:“I can tell mum & dad have been on a course - actually they understand better, and they respond better (they stop telling me what to do)”So, in this instance initially the sibling with the ED noticed the change and resisted it as her ED voice would initially be very loud - don’t listen to that psychobabble. Over time the sibling with ED realised that there were clear benefits and sufferers often report that having been on a course:- My mum and dad understand the challenges I am facing better- It was such a relief when they stopped just telling me to eat more and exercise less- I felt they started to believe I could recover- They stepped back a bit and let me take more responsibility for my own recovery- They were able to talk about normal everyday things, rather than jus always focusing on

my ED.

Scenario Three - My sibling seems to want me to be on her side against Mum & Dad (the enemy)Freya: I’m a bit unhappy about how mum & dad have brought us up!But then she changes the conversation. How should Joe respond to this sort of comment? It is an opening to further conversation so Joe might sayJoe : I’m a bit pissed off this week with mum & dad (stepping alongside her and opening the door for a future conversation if she wants it.) They treat me like a child sometimes OR they are just so old fashioned OR they just don’t understand our generation OR they don’t understand how expensive things are…..

Being an ally as a sibling is not the same as colluding with the eating disorder. It is a normal part of a sibling relationship. Scenario Four : Getting stuck in the middleSiblings often feel stuck in the middle. Eating disorders are illness of disconnection and will do their utmost to break down all the close family relationships. If you can see this is happening, try to think about how to repair a ruptured relationship in your normal life - what would you do if your friends or work colleagues fell out and you wanted to smooth things over?Talking is usually a good strategy.Explain to your parents how you sometimes feel stuck in the middle. Is there anything different you would like them to do?

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Explain to your sister how you sometimes feel stuck in the middle and that this makes you feel uncomfortable. You don’t see it as having to take sides. You all want the same thing, which is for your sister to be able to live a normal life having conquered her ED behaviours and thoughts. Scenario Five: How to Respond to a high anxiety – hyper sensitive outburst from your sibling.Becky: Tom you are so useless and nasty and you don’t care about me and I hate you ……Tom’s natural instinct is to fight back. Instead, he takes a breath and rolls with resistance:Tom: Becky I am your brother and I will always be here for you. Right now, I need a break because I am feeling really wound up. I am going to go and listen to my music and we can talk later OR if you don’t want to leave herOR get mumOR I am going to sit here and listen to you, whatever you want to say to me. I am not going to say anything because I am too wound up. I am not going to leave you.

Scenario Six: I feel like I am a spy (should I tell my parents?)Medical risk - if medical risk is very high then you will be supporting your very unwell sibling by being a spyIf medical risk is low - consider it on a case by case basis.Example: Freya says she doesn’t like being asked to do something when it is actually an instruction (rhino style parenting & habit)Aim is to help Freya understand it is a bit of a generation gap issue, (empathy) and also to encourage Freya to tell them how she is feeling Joe: so it makes you feel bad and mum would hate to think that what she is doing makes you feel bad. How about you just tell her, or if you like I could tell her for you?This approach helps Freya to understand it is ok to tell her parents when they are getting it wrong, or whatever they are doing isn’t helpful.

Every time you feel you want to broach a subject with your sibling consider Reasonable RiskWhat is the worst thing that can happen? Nothing changesWhat the best thing that can happen? Freya talks about this to my parents and it is a tipping point to her being more able to communicate with usWhat is the most likely thing that will happen? Food for thought - penny in the piggy bankIf in doubt you can always roll with resistance

Playing Devil’s Advocate can be useful: - Your sister says accusingly - What course have you been on?

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Possible responses: The truth - a sibling course, it was really interesting You might think I have been on a course because I am trying to manipulate you, or

you might think I am spying on you. The reality is I am tyring to understand and reconnect with you.

If nothing changes nothing changes I am trying to connect with you and maybe I’m not very good at it I’d love your life to be more than just about the ED, more fun, bigger, (old person

phrase)

Think about the Spirit of This ApproachCollaborativeEmpathyOpen mindedFlexiblePennies in the piggy bank - small baby steps.Forward looking - Possible goal setting One minute a day story - eg reducing activity (see separate goal setting capsule)

Adult sibling feedback on the skills sessions Really useful techniques Think more about the language I am using Confidence to do more normal things with my sibling Confidence to talk to my sibling Playing games is a good option It is early on for my sister and my mum & dad are about to do the course, so it will

be interesting to see how the techniques work. It was really good to consider our actual examples I was a bit overwhelmed after the first session, this one really helped to consolidate

the techniques and bring the approach to life Really helpful to consider actual conversations and hear the one minute a day story I hadn’t thought about goal setting so that is really useful to think about

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