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Cambridgeshire & Peterborough Adults Mental Health Support

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Caring for someone with an eating disorder

Eating Disorders Group Image with a speech bubble saying \'You are not alone\'.

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Welcome

Do you provide care or support for a loved one, friend or colleague with an eating disorder?

Here are warm words and ideas from parent/carers to help you support someone with eating challenges.

You are not alone.

The information on this page has been collected from discussions at carer support groups. The summaries of these conversations are linked throughout the page and also in our resources section under books.

Note - This guidance relates to adults. Many of the ideas are relevant to children and young people, too, but parents should always ask the person who is treating their child how best to help.’

Signs and symptoms

Anyone can have an eating disorder; you don’t have to experience all symptoms to be struggling with one. Individuals who have their own experiences with eating disorders have put together a list of signs and symptoms to look out for, alongside a list of different eating disorders and their descriptions which you can view here.

Early habits - There can be early signs or habits that are unhealthy for individuals to do. It is a good idea to act quickly. Beat have a 'Know the first signs' poster which you can see the the right or you can download a copy here.

Questions you may be asking yourself:

Here are some questions you may be asking yourself image

We are worried that our loved one might have an eating disorder – what should we do? +

Scenario

There are a wide range of symptoms and signs of an eating disorder, you may have noticed a few of these when with your loved one. Eating disorders are a serious illness and it is important to catch them early on before they can develop further; recovery is possible and more likely the earlier an eating disorder is identified and treated.

What can we do to help?

  • Start up a conversation about what you’ve noticed and express that you’re concerned for your loved one’s health and wellbeing
  • Use open questions to help your loved one understand how they are feeling and why they may be doing certain behaviours
  • Your loved one may get defensive and not wish to speak about how they’re feeling and acting, be patient and ask the big questions in a low stress moment
  • Ask your loved on if they would be willing to talk to someone about how they are feeling and inform them on how serious eating disorders are
  • You can encourage your loved one to speak to their GP, another health professional or support service

Anything Else?

Find out about eating disorders. Beat are the eating disorder charity for the UK. NHS also have information on their websites about eating disorders.

More Ideas

See pages 11 and 12 of Skills-based Caring for a Loved One with an Eating Disorder by Janet Treasure, Grainne Smith and Anna Crane. Routledge. ISBN 978-1-138-82663-2. 2

Carers support group summary, 23rd June 2020, page no: 31.

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What is the best way of caring for our loved one? +

Scenario

On the face of it this may seem a strange question but anyone with lived experience will tell you how counter-intuitive caring for a loved one with an eating disorder is.  For example, for many sufferers, especially in the early days, their eating disorder gives them something positive, i.e. a way of coping with unbearably strong emotions, thoughts and feelings.  We see eating more healthily as a way of getting better but they see taking away their eating disorder as a threat and something to be resisted.  One carer described it as a ‘topsy turvy world’ where ‘you will almost certainly have to learn some new skills’.

What can we do to help?

At a support group meeting, two former sufferers talked about their recovery journey, the important role their families played and how best we as parent/carers can help:

  • Unconditional love - being there and listening; being non-judgemental
  • Showing that you care - one described how her mother put notes under her bedroom door at times when discussing her illness more openly was difficult, which demonstrated that she was not blind to her struggle
  • Connecting - about non-eating disorder subjects / activities, so that the illness does not define the entire relationship
  • 'Nudging' - making an appointment for her and telling her about it but leaving it up to her as to whether she attended or not

    'Be more dolphin' in her book (see below) Janet Treasure uses animal metaphors to describe our behavioural and emotional responses.  The dolphin, who nudges our loved one’s head above the water but lets them do the work of getting safely to shore, is contrasted with the rhino, who charges in with the answer and makes our loved one back into a corner.  The kangaroo, who puts their loved one in their pouch to protect them – a perfectly natural parent/carer reaction – is also unhelpful because our loved one never has to face up to getting better. These metaphors are really helpful.

    Anything else?

    • Remember the ‘3 Cs’ - stay Calm, be Compassionate, show you Care
    • Sometimes you will need to step back before you step in again – count to ten and say the third thing that comes into your head, not the first

    More ideas

    • See Chapter 5 of ‘Skills-based Caring for a Loved One with an Eating Disorder’ by Janet Treasure, Grainne Smith and Anna Crane.  Routledge.  ISBN 978-1-138-82663-2.  2nd Edition
    • See the videos signposted in the Carers Support Leaflet

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    What should we do if our loved one becomes overwhelmed / distressed? +

    Scenario

    There are many occasions when our loved one might become extremely upset. Not surprisingly, mealtimes can be a flash point. Shouting, screaming, hitting themselves, throwing food – sometimes this happens. Something could trigger your loved one to react in a distressed or overwhelmed way, this could be shopping, a social occasion. Anxieties can build up over a varying length of time. 

    What can we do to help?

    • In advance of a situation, encourage our loved one to a use a calming strategy e.g. meditation, taking the dog for a walk
    • During a situation there are other strategies to help that can be applied, e.g. breathing techniques or agree a distraction, such as watching the television
    • Validate and empathise so that they know they are not making it up and that you recognise how difficult it is
    • Advanced planning and discussions at a calm time prior to events or situations, about what your loved one may find helpful 

    Anything else?

    • Stay calm, don’t get drawn into the fight
    • Step back if necessary, step in later when you feel up to it
    • Look after yourself

    More ideas

    See pages 188-191 of ‘Skills-based Caring for a Loved One with an Eating Disorder’ by Janet Treasure, Grainne Smith and Anna Crane.  Routledge.  ISBN 978-1-138-82663-2.  2nd Edition. 

    Carers support group summary, 26th May 2020, page no: 24 and 6th October 2021, page no: 9.

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    Our loved one keeps asking for reassurance – what should we say? +

    Scenario

    Most carers will have experienced their loved one seeking reassurance by constantly asking the same question.  ‘Do I look fat?’  ‘Do these clothes fit alright?’  ‘Does it matter if I go out for a run?’  It is understandable that we want to reassure our loved one that they are not fat, that their clothes do fit and that it doesn’t matter if they go out for a run.  However, although this relieves their (and our) immediate anxiety it does not help in the long run; they will simply come back to us and keep asking.  This is what is called ‘the reassurance trap’.

    What can we do to help?

    • Discuss the ‘reassurance trap’ in a low stress moment.  Listen to their concerns and help them ‘name their feelings’.  Talk about how their anxiety will pass and won’t be so much of a problem next time.  Agree what you are going to say the next time they ask you a particular question
    • Respond with empathy, warmth and, if appropriate, your agreed response: ‘‘I can see you are really anxious, as we discussed it’s not helpful for me to answer this question’.  ‘I know you are really anxious, I know you can make the decision about this’.  ‘I understand you are worried, you know the answer to that question’
    • Be consistent, don’t ‘give in’.  You may need to be like a stuck record (remember those?), playing the same line again and again

    Anything else?

    • Stay calm.  Your loved one may become very distressed – it will pass
    • Praise occasions when your loved one successfully manages to cope with their anxiety

    More ideas

    You can read more about ‘Reassurance Seeking’ here.

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    What should we do if we get overwhelmed/distressed? +

    Scenario

    Looking after a loved one who is unwell or going through an emotionally and physically demanding illness may take a toll on your wellbeing. You may experience challenging times, barriers or inconveniences that cause you to become overwhelmed and/or distressed. It could be a very draining time that you are going through and it is natural to feel sometimes exhausted from everything. 

    What can we do to help?

    • Self-Care
    • You may want to seek professional help for yourself
    • Be open and honest with your loved one about needing support from the people around you. It is important to respect their confidentiality. Equally they need to understand what you are going through and what will help you

      Anything else?

      Setting boundaries is also important – please see the next question for more information on setting boundaries.

      You are human and are likely to experience your own challenges. Remind yourself that it is ok to have rest days.

      More ideas

      You can view different support services for yourself here.

      Carers support group summary, 1st September 2020, page no: 75, 3rd November, page no: 34 and 9th February 2021, page no: 121.

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      How do we prevent our loved one’s eating disorder taking over our lives? +

      Scenario

      When living with a loved one with an eating disorder it is easy to slip into the role when you will do anything to help your loved one. Acting like this is accommodating the illness and does not help in the long term.

      You can spend a lot of time (and money) around food; planning, shopping, preparing, cooking and eating.

      • Buying the right ingredients – e.g. a particular brand of bread with the lowest calories even if that means visiting several shops to find it
      • Prepping in a very specific way, with arguments about how food should be prepared, if there is enough/too much. Then the demands about how, where and when the meal is eaten and with whom

        What can we do to help?

        Know and set boundaries:

        • These are ground rules unique to your family, and can be difficult to enforce if clear rules not agreed upon and backed up by all family members, e.g. Agree to a shopping list and if that brand is not available buy an alternative and calmly explain why you can’t go to several shops (have to get to work, need time for hobby/dog walk).
        • Model keeping family life as normal as possible

        Family problem solving

        • Talk to individuals before bringing everyone together, pay particular attention to any siblings
        • When everyone is calm, make a list of things that are expected (from everyone), and things that are unacceptable to refer to for confidence and consistency when challenged
        • Make this a set of family ‘House Rules’ (rather than eating disorder-specific boundaries)

        Try to hold the important boundaries, the lines you will not cross.

        • But roll with it if it is not working, try again at a calmer moment, be prepared to re-negotiate 

        Anything else?

        Stay calm.

        Look after yourself by regularly setting aside time to spend with your partner/friends/relations when you don’t discuss the eating disorder.

        Focus on the individual, not their illness.

        Show unconditional love.

        We are only human, so we need to allow ourselves to have time for us.

        More ideas

        Beat website

        FEAST website

        Information on why boundaries are important in eating disorder recovery

        Skills based caring for a loved one with an eating disorder. Page 105-106 and 205. - Skills-based Caring for a Loved One with an Eating Disorder by Janet Treasure, Grainne Smith and Anna Crane.  Routledge.  ISBN 978-1-138-82663-2.  2nd Edition.

        Information and skills for when you may be falling into eating disorder traps, for example portion sizes, safe foods, activity/exercise, pretending you didn't see something and shopping for the eating disorder.

        Carers support group summary, 26rd May 2020, page no: 24.

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        How can we keep going – we’re feeling done for and this illness goes on for such a long time? +

        Scenario

        It can take a long time to recover from an eating disorder and there are many ups and downs along the way.  As a carer this is emotionally and physically exhausting.  All you want is for your loved one to be better, but the finish line seems nowhere in sight.  How do you keep going? 

        What can we do to help?

        • Maintain your hobbies and interests that are nothing to do with the eating disorder, so that they become a sanctuary where you can recharge your batteries
        • You might find using a notepad to write everything down to be helpful as it can be used to get thoughts and feelings out of your system
        • Stay in touch with a small number of trusted friends
        • Sometimes it is important to stop, step back and pause before you step in again

        Anything else?

        • Remember to tell yourself that recovery is the most likely outcome
        • Keep active.  A walk will improve your mood.  Proof? Note how you feel before you go and when you get back

        More ideas

        Watch the ‘Carer Fatigue’ video here.

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        Where can I get support for myself? +

        Scenario

        The constant pressures involved with living with and supporting a loved one with an eating disorder can be overwhelming. It can take over your life leaving you exhausted, pressured and hopeless. It may be difficult to share what you are going through with others, so you could feel alone.

        What can we do to help?

        • Look after yourself. Be prepared to seek professional help yourself
        • Be open to connecting with people who have similar experiences. Support groups can be invaluable. Share the burden with others

        Anything else?

        More ideas

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        How can we talk with / respond to our loved one about topics or questions that might provoke an angry or negative response? +

        Scenario

        There are many occasions when what we think is the most sensible thing to do is not what our loved one wants to hear and/or they ask us a question and we know they will not like our answer. They may become angry or upset and the outcome is unlikely to be positive. Arguing doesn’t work, our loved one will come up with more ideas for why they are right, and you are wrong, making the problem worse.

        What can we do to help?

        • Be curious rather than judgemental.  For example, if our loved one is threatening to discharge themselves from hospital against advice, ask ‘How are you going to manage at home?’ rather than saying ‘I don’t think that’s a good idea’
        • Refer to the higher authority.  ‘Your doctors have agreed what’s best for your treatment, we’re here to support you with that’.  The ‘higher authority’ can be something you’ve read or something that you’ve heard
        • Pick a calm moment - if emotions are high, it is unlikely that any discussion will be productive
        • If your loved one keeps asking the same question, answering might help them in the short term but not in the long term. Plan what you are going to say in advance e.g., ‘We agreed I wouldn’t answer that question again because we have discussed it before’. ‘I understand you are worried; you know the answer to that question’

        Anything else?

        • Difficult conversations need lashings of empathy, e.g. 'I see that this is really hard for you to talk about, and I am so pleased that we are having this conversation.  How best can I help?'
        • Remember the ‘3 Cs’ - stay Calm, be Compassionate, show you Care
        • Ask yourself, ‘What would a good Dolphin do?’  In other words, don’t charge in with the answer, like a Rhino, or avoid the question, like an Ostrich… Do use open questions to encourage your loved one to find their own answers

        More ideas

        Although more targeted at children and young people than adults, this link has some very relevant advice about non-combative communication styles.

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        What do I need to know about consent and confidentiality? +

        Note - Confidentiality is very important. Confidential information about a patient should only be shared with their explicit consent. Confidential information about, or provided by us as parent/carers should only be shared with our explicit consent.

        This guidance relates to adults.

        Scenario

        At the beginning of any treatment, whether at the GPs, with a Community Team or in a specialist inpatient unit, our loved ones will be asked if they give consent to share information with us. Quite often they do not, or give consent for only some information to be shared, or only with some people. This can make us feel as if we are providing support ‘in the dark’. It can also make us feel side lined, despite the efforts we are making, and this can lead to resentment. How do we deal with this?

        What can we do to help?

        • Be reassured - confidentiality should and will be breached if your loved one’s life, or someone else’s life, is at risk
        • In the absence of consent staff are encouraged to share non-confidential information with parents/carers because the more we know and understand about our loved one's illness and treatment the better we can support – ask if this doesn’t happen
        • If you have information that is important to your loved one’s recovery you can always pass it on in confidence - you might not get a response, but it will be taken into consideration; the team supporting your loved one’s recovery would rather know than not

        Anything else?

        • Try to plan. In the depths of the illness, or the heat of an emergency admission, your loved one’s response may be different to their view in healthier, calmer moments
        • Asking permission can be very helpful: ‘What would you want me to do if....?’  Your loved one may be willing to write this down so that the professionals do not have to take your word for it
        • Consent should be regularly reviewed by the professionals – you can ask if this is happening

        More ideas

        • All service providers will have a Consent and Confidentiality Policy. You could ask to see this if you had concerns
        • Cambridgeshire and Peterborough NHS Foundation Trust has produced a ‘Common Sense Confidentiality’ leaflet that explains clearly what should happen and what you should do if you have concerns

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        Long distance caring- How can we help our loved one if they live away from us? +

        Scenario

        Often our loved ones may not live with us; they may be moving in with a friend, a partner or relative, they may be at university or have a new job and move away. It can be a worry as not being able to physically see a loved one can leave you wondering how they are (as when they are close, spotting signs are easier). It also can be challenging if they do not talk to you about their eating disorder.

        What can we do to help?

        • They are adults; this is their chance to test out real life managing an eating disorder. Give them support and have belief in them and offer unconditional support. ‘I think you’re really brave getting this job and moving away, if you need us we are here for you’
        • Check in with them by text, phone or video call; ask open questions ‘How has your week been?’ ‘How are you feeling?’ They can choose how they respond and sometimes a text or quick call talking about something other than the eating disorder can open channels for more conversations
        • Ask permission to ask questions, ‘Would you mind if I ask you a question about your eating disorder?’ ‘Can I ask you about how you are getting on with your meal plan? Its ok if you don’t want to discuss it with me.’ Giving them choice to answer

        Anything else?

        • Often you can get a feel for how someone is doing by a quick message; ‘I’m wondering if you are struggling a bit, you seemed a bit anxious on our call, I’m here if you need to chat?’  This can keep the channels of communication open

        More ideas

        Motivational interviewing techniques can be helpful. E.g., when you are talking on the phone ask lots of open questions, check that you’ve understood what they are saying (that will help them to sort out their own thoughts, too), listen, listen, listen, pull it all together and don’t give an opinion unless asked.

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        What can we do about partners / friends / family who react differently to our loved one’s illness? +

        Scenario

        This is very common and very complex.  If one partner has had the lead caring role, the other may feel left out, or begrudge receiving less attention.  Friends may not understand why you don’t just tell your loved one to snap out of it and eat properly. Family may say unhelpful things unwittingly, e.g. ‘You’ve put on weight, You’re looking so much better’. 

        What can we do to help?

        • The best thing you can do is share and spread the load. Be open and honest about the situation and the illness, and how it is affecting you as a family. Include your loved one in this decision
        • Make sure that you prioritise time for the relationship, whether it is with your partner / a parent / a special friend.  Relationships need nurturing
        • Make a real effort to talk as a family.  If you don’t help them they will probably say the wrong thing
        • If you have been the main carer, be generous and supportive if your partner, or a friend, wants to be more involved. This can feel a bit threatening - 'Am I not good enough?' - but it could be really helpful, to you and them

          Anything else?

          • Remember that recovery is not only possible, it is the most likely outcome. It will not be like this for ever
          • Don't feel guilty. Relationships sometimes fail even in that 'normal' world outside of the strange world we inhabit

          More ideas

          See ‘Eating disorders: a guide for friends and family’ on the BEAT website.

          Carers support group summary, 23rd March 2021, page no: 141.

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          How can we best support our loved one’s siblings? +

          Scenario

          When you have a loved one who is struggling with a serious mental illness, a lot of focus can be around them and what they need. For your loved one’s siblings it can be shocking to see their sibling’s health decline and to learn of how they have been struggling. Our loved ones siblings may need some support too.

          What can we do to help?

          • Reassure them that they have not done anything to contribute to their illness, it’s understandable to feel overwhelmed and they don’t need to feel guilty about getting on with their life and enjoying themselves. In fact by doing this  they are actually showing what ‘normal’ is and are being a good role model for their sibling
          • Check in with your loved one’s siblings on how they are feeling. Give time and space for them to ask questions
          • Keep lines of communication open about ‘normal life’. Don’t let the eating disorder be the focus of every conversation, enjoy some things that are nothing to do with the eating disorder

          Anything else?

          • Beat have an online video based peer support group called Solace, which is hosted over zoom, and it is for anyone who is supporting someone with an eating disorder
          • Support them to help and contribute as much as they feel able without pushing them

          More Ideas

          Carers support group summary, 18th August 2020, page no: 65 and 9th March 2021, page no: 137.

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          Our loved one is stuck- how can we help motivate them to make the next step in their recovery? +

          Scenario

          Throughout your loved ones eating disorder there may be times that they become stuck and may find it hard to make changes. They may be in an action phase where they are trying to introduce new foods and are unable to make that change; they may be attempting to go out for a coffee and introducing a snack as well and feel overwhelmed; they may be stuck in a binge purge cycle or they may be over exercising unable to decrease their activity.

          It can feel challenging as someone attempts to make changes and becomes stuck, provoking a range of emotions in our loved ones such as fear, anxiety, failure, frustration, and also in you as a carer.

          What can we do to help?

          • Understand how big a challenge making changes can be to someone. Empathise and acknowledge how hard it can be to make that change. It may take a few attempts before change happens, your loved one may feel disappointed with themselves and feel like they are letting you down too
          • Active listening- use open questions; ‘How are you feeling about going for a coffee?’  Reflect what they have said to you, to show you have listened and try not to offer advice
          • Give feedback – ‘I can see you are thinking about trying to add a snack in, that’s great that you are thinking about trying, I can see it’s making you anxious.’ ‘I thought that was really brave you going out for a coffee with your friend.‘ 
          • Allowing our loved to come to their own conclusions about a decision, ‘On the one hand you really want to stop running every day because the doctor has said you are at a really low weight, and I understand it’s not that easy to just stop. I wonder if you have any ideas on how to work on that?'
          • Try and recognise the emotions that are generated by being stuck and trying to implement change. Offer words of support and encouragement ‘I can see it’s causing you some anxiety that you haven’t done any exercise today. That’s not a great feeling, would you like to watch a film or play a game?
          • Motivation- a life to get well for. Model living your life, invite them to join activities that you both enjoy. Focus on the positives in their life; ‘Your day volunteering is really tiring, and your body needs energy to do that, have you any ideas to help you?’

            Anything else?

            Small steps are key to making changes, maybe just going to a coffee shop and sitting there, and even if your loved one couldn’t achieve their plan, acknowledge that you thought they did well to join you and reiterate you will support them to try again when they are ready. Being patient and accepting that being stuck is a hard place to be, for both them and you.

            More ideas

            Motivational interviewing, see pages 94-99 of Skills-based Caring for a Loved One with an Eating Disorder by Janet Treasure, Grainne Smith and Anna Crane. Routledge. ISBN 978-1-138-82663-2. 2nd edition.

            You can watch a video about the stages of change here.

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            Our Loved one is being discharged from a specialist inpatient unit- how should we prepare for this and what should we do? +

            Scenario

            An inpatient admission stay can vary in length of time. Before discharge your loved one will be invited to a Care Plan Assessment (CPA) with all the professionals involved in their care to discuss how their treatment will be continued. Attending the CPA (with consent) will be helpful to support your loved one on the next stage of their journey. An inpatient stay will have involved lots of support around mealtimes, snacks, and many other areas of the eating disorder; it will have been very structured and your loved one may feel anxious or apprehensive at having to continue their recovery at home. It may be that your loved one struggles to stick to their meal/ snack plan and that causes them some distress. It also may be an anxious time for you.

            What can we do to help?

            • Offer to make a plan together; how would your loved one like to be supported by the family? What might be helpful/ unhelpful? Do this at a mutually agreed time, away from mealtimes
            • If they struggle to stick to their meal plan - acknowledge that following it may be difficult, praise their efforts with how hard they have worked to get this far, empathise how challenging it is to do this themselves and offer your support, 'How can we help you around mealtimes?'
            • Try not to show your anxiety or disappointment around missed snacks or meals. Empathise, try and offer a non- judgemental response. 'I understand this might be difficult to eat your snack and you’re disappointed you couldn’t eat it, I wonder if there is a way I can help you next time?'
            • Refer to the medical professionals if you have concerns, they may not be able to share any information but you can tell them if you notice any worrying signs of the illness

            Anything else?

            Don’t be surprised to find there may be ups and downs in recovery. Your loved one’s recovery may not follow a linear path after their inpatient stay and they may still have work to do, this can create anxiety for them and you.

            Try and focus on activities that you can do together that aren’t based around food. What are their interests?

            Model living a normal life. Go to the cinema, have days out, invite them and also allow yourself time off too, supporting someone in their recovery can be challenging.

            More ideas

            Be open to connecting with people who have similar experiences. Support groups can be an invaluable. Share the burden with others.

            BEAT have a range of support services available - helplines, peer-support, echo - BEAT's peer support network and on online chat service. Services for Carers (beateatingdisorders.org.uk)

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            Our loved one is self-harming as well as not eating – what can we do? +

            Scenario

            An aspect of an eating disorder could be causing other physical harm to themselves as a way of coping. Self-harming can often be a way of feeling something at a time when someone is feeling nothing or is experiencing negative thoughts.

            What can we do to help?

            • You can look out for warning signs, tissues, scarring or wounds, or broken razors/sharpeners, hiding arms or legs more than usual. You could suggest less harmful ways of relieving pain like elastic band twanging or holding ice cubes
            • Look into stress relief toys for adults
            • Try to stay Calm, be Caring and show Compassion. Recognise some triggers for your loved one and empathise with them to help them express their feelings. You can approach their self-harming in a way that is caring by saying ‘That burn looks like it might need dressing’ or ‘Your cut may need some care’ as they can then decide what to do

              Anything else?

              Be curious for the reasons your loved one is doing this behaviour, think about what purpose it serves. They may be trying to say something but can’t express it which is something we can help with.

              More ideas

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              How do our loved ones co-occurring mental health conditions affect their treatment and the support we should give? +

              Scenario

              Alongside an eating disorder your loved one may be suffering from other mental health disorders such as Anxiety, Depression, OCD, Self-harm, Substance or Alcohol abuse. These may have been present before the eating disorder began or may have developed as a result of the eating disorder.

              Your loved one may be experiencing acute anxiety when they are faced with making changes, which may also extend out into their wider life such as school or work. The physiological changes of an eating disorder may also impact on your loved ones mental health. Self- harm may be a coping strategy to manage their distress. For more information on this click here. All of these things are incredibly hard to watch someone you love go through.

              What can we do to help?

              • The three Cs- Caring, Calm and Compassion. Acknowledge their struggle, empathise with how they feel and stay calm. Anxiety can be very distressing to watch and high levels of anxiety come down naturally with time. Holding the space whilst your loved one sits with these uncomfortable feelings is difficult and often just being present is comfort in itself to them
              • If your loved one is experiencing other mental health disorders, they can be addressed with their GP and may be prescribed anti-depressants or other medications. They may need support or gentle guidance to seek extra medical advice, ‘I can see you are so anxious. I wonder if you saw the GP they may be able to give you some support’
              • Don’t get caught out with the reassurance trap if your loved one has anxiety
              • Get out in nature - beneficial and within 20 minutes of being in nature stress hormone levels come down.  Sit under a lovely tree or take a walk in a wood

                Anything else?

                Keep yourself well. Supporting someone with an eating disorder is a marathon not a sprint. Give yourself time out.

                If your loved one is experiencing a crisis, ring NHS 111 and press option 2 (only in Peterborough and Cambridgeshire) to speak to the mental health First Response Service.

                More Ideas

                For information on mental health support services click here.

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                Our loved one is using/taking a substance, like alcohol or drugs, more then they usually would – what should we do? +

                Scenario

                Mental health illnesses can sometimes go hand in hand with other challenges like alcohol consumption, drug taking or addictions. This is not a given, however it is common. Drinking more alcohol then usual or taking substances may be a way of your loved one coping with something they are experiencing.

                What can we do to help?

                You could speak to your loved one about your concerns. Try not to judge them or be hard on them about this. Work on understanding what is going on for them to maybe they can share why they are drinking or taking a substance.

                Anything else?

                You can signpost your loved one to a support service. Change Grow Live (CGL) are the leading drug and alcohol support service for Cambridgeshire and are called Aspire in Peterborough. For CGL Cambridgeshire’s services follow this link.

                For Aspire Peterborough follow this link.

                More ideas

                The SUN Network have video addiction recovery stories from individuals in recovery from addictions including eating disorders.  You can watch their videos here on addiction here and their videos on eating disorders here.

                The National Eating Disorders Association (NEDA) have information on this available here.

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                What should we do if our loved one is over-exercising? +

                Scenario

                Typically exercise brings physical and mental benefits. Excessive exercise causes physical and/or mental harm. Many people with an eating disorder use excessive exercise as a way of controlling weight / feelings / body shape.  This can place them in physical danger. As carers we cannot make our loved ones stop exercising, although we can support them.

                What can we do to help?

                • If our loved one cannot contemplate changing their exercise regime, we can work towards creating an awareness of the problem. Ask yourself what the costs for them are so that you can feedback to them, e.g. are they very tired, or in pain.  You can try to share observations in a calm moment, e.g. ‘I’ve noticed that you are very tired’.
                • If they are receptive to change, at least to some extent, we can create ambivalence, e.g. ’On the one hand you want to go running and on the other you’ve not got enough energy to do as well as you would like to’.  Use open questions ‘Why is exercise so important to you?’.
                • If they are serious about change, you can be more directly involved if they want you to.  Remember to validate their feelings, e.g. ‘I see that this is very hard for you, I'm here for you’

                Anything else?

                • Relapse - if your loved one returns to over-exercising help them to get back on track by reminding them of their past successes and that you are there to support them

                More ideas

                See the information about compulsive exercise here.

                Carers support group summary, 29th December 2020, page no: 80.

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                How can we help make our loved one’s transition to university a success? +

                Scenario

                Our loved one wants to go to university / college in a different region away from home and their support network. Possibly going against professional advice.

                This is a big change that makes us and our loved one anxious.

                What can we do to help?

                Try to find out and understand their thoughts and feelings. They may be in two minds about going. It can be helpful to use conversations to explore the discrepancy:

                ‘On the one hand you really want to start your course, and on the other you are worried that you might not have the energy for a full day’s study or be able to join in with the other students’.  

                Let the thought sit with them. Let them draw their own conclusions.

                The team supporting your loved one, the place of work, the college - all want to put measures in place so that things go well.  They should welcome any information you can provide that will support them in this goal, and although this is better done with your loved one’s consent it could be done in confidence.

                Plan ahead with your loved one in low stress moments, for example, having a routine, registering with a GP.

                Make your own plans in advance. For example, how will you react if the move to university fails (answer calmly and learn from it!); how are you going to keep in touch (weekly call, facetime, email, text).

                Anything else?

                • Our loved ones have to learn to manage their illness themselves; they have to take their own decisions, even if it is against professional advice. Experienced carers have shared that loved ones were failing at university initially, but succeeding subsequently, often on a different course and/or at a different university, or apprenticeship
                • Listen to their hopes and concerns; validate their worries, don't try to fix them; encourage them to think about how they have coped with this and/or other anxiety provoking situations before; help them to find their own way forward
                • More validation - most people find making friends in a new place an anxious time - hearing from you, for example, that most people feel anxious when they join a club or society but this will pass, and is a good way to get to make new friends, may be very helpful
                • Offer support from a distance. To quote Janet Treasure, 'They alone can do it, but they can't do it alone’

                  More ideas

                  It can be helpful to explore the range of support services available to students with your loved one, including: 

                  • Out of hours care
                  • Phone lines
                  • Counselling, both academic and pastoral support.

                  All this information can be found out on the university websites.

                  Mental health matters - A national charity delivering mental health and social care services.

                  Student Minds - The UK’s student mental health charity.

                  The Mix - The UK’s leading support service for young people.

                  Carers support group summary, 14th July 2020, page no: 46, 15th September 2020, page no: 84 and 22nd September 2020, page no: 87.

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                  How do we cope with family celebrations; Birthdays, Weddings, Religious holidays etc? +

                  Scenario

                  There is a big family birthday coming up, with visitors, lots of food and drink, changes to routines and lots of socialising.

                  Some of the thoughts running through your head may be:

                  • What can you feed your loved one?
                  • How can you support your loved one?
                  • How can you cope with critical relatives?
                  • How can you make sure the event is enjoyable for all family members?

                  Remember; family celebrations are a challenge for you, the family and of course your loved one experiencing an eating disorder. It can be very stressful for everyone

                  What can we do to help?

                  Plan!

                  Use a problem-solving framework to define the problem, think of ideas to solve the problem creatively and then list the pros and cons for each solution. Pick the best idea and plan it (and add a few backups).

                  Ask everyone what they would like to do on this occasion; pay attention to any sibling’s thoughts. Try to include some of these ideas. Discuss and negotiate with your loved one how they would like to manage the event. For example, if planning a sit-down meal having the chair nearest the door so they can leave if it gets too much without causing a physical disruption.

                  Prepare relatives in advance. Perhaps suggest and prepare some ‘What to say’ ‘What not to say’ ideas.

                  Organise some non-food activities.

                  Take some time out for yourself.

                  Anything else?

                  Plan!

                  Have a back-up plan … or two.

                  Be prepared to be flexible.

                  Try to bring some humour into the event; for example, play ‘Disaster bingo’ – think of all the things that could go wrong / be said … and then tick them off as the day progresses.

                  Review how it went; consider the good and bad and remember them for next time.

                  More ideas

                  Delegate some tasks to others to share the burden.

                  BEAT Guide for friends and family.

                  Carers support group summary, 8th December 2020, page no: 70.

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                  Other helpful links to further information+

                  Is there another question you would like answering? Email it to victoria.morton@sunnetwork.org.uk and we will try to update the information on this site and answer you.

                  There are numerous myths about eating disorders. To read these please click here.

                  Two people sitting on a bench chatting - carers

                  Services information

                  Peds logoPEDS - Personalised Eating Disorder Service is a charity based in Peterborough, who offer support to people experiencing eating challenges. 

                  CPFT logoCambridgeshire and Peterborough Foundation Trust for Carers (NHS)This is the local branch of the NHS for Cambridgeshire and Peterborough who offer support for carers. Some of the services CPFT provide for carers are if your loved one is currently accessing support and others are if your loved one has been referred into services.

                  CPSL Mind logoCPSL Mind - Cambridgeshire Peterborough and South Lincs Mind are a local charity that is part of Mind’s national charity. They deliver various services to support individual’s mental wellbeing. Relate Cambridge logoRelate - Deliver counselling for people living in Cambridgeshire or Peterborough.  

                  CGL logoCGL Cambridgeshire (Change Grow Live Cambridgeshire) - are the main provider for substance addiction support in Cambridgeshire 

                  Aspire Peterborough - is part of Change Grow Live (CGL) who provides substance addiction support in Peterborough. 

                  NHS 111 option 2First Response Service Mental health crisis support NHS 111 option 2, 24-hour support service for people in Cambridgeshire and Peterborough. Upon calling you speak to trained mental health staff. 

                  Rethink logoRethink Carers Support - Advice and support for those caring for someone with a mental health illness and those experiencing a mental health illness. You can view the Cambridgeshire and Peterborough Rethinks here. You can view their carers information hub here.  

                  CPFT logoCPFT Eating Disorders Online Carers Support Group - When the country went into lockdown, CPFT arranged to replace the monthly Eating Disorder Carers Support Group with a weekly online meeting to provide support and advice. You can read their previous summaries here and the latest Carers Support Group Summary here.

                  Carers Direct Helpline - If you are a carer, the helpline advisers can give you information to help make decisions about your personal support needs and the needs of the person you're looking after. This information includes assessments, benefits, direct payments, individual budgets, time off and maintaining, leaving or going back to work or education. The Carers Direct helpline doesn't however; provide personal financial, medical or legal advice and doesn't provide casework, advocacy, representation or counselling.

                  Carers trust logoCarers Trust - We work to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems. We do this with a UK wide network of quality assured independent partners and through the provision of grants to help carers get the extra help they need to live their own lives.Making space logoMaking Space - We provide services in the heart of local communities, in the comfort of people’s own homes, and specialist care and support services. Our professional, caring employees and volunteers deliver our services with dignity, respect and compassion, focusing on outcomes that help the people we support have the freedom to enjoy an everyday life.Pinpoint logoPinPoint - Helping Cambridgeshire parents who have children with additional needs and disabilities. Pinpoint Cambridgeshire is run for parents – by parents. We give help and information to parent carers of children and young people aged 0-25 with additional needs and disabilities, and give parent carers opportunities to have a say and get involved in improving local services.

                  Caring Together logoCaring Together - Caring Together provide information and advice, run services in local communities and campaign so that carers have choices. If you look after a family member or friend find out more by calling them on 0345 241 0954, emailing hello@caringtogether.org or visiting caringtogether.org

                  Mental health matters logoMental Health Matters - A national charity delivering mental health and social care services. 

                  Student minds logoStudent Minds The UK’s student mental health charity.

                  The mix logoThe Mix - The UK’s leading support service for young people.

                  Nightline logoNightline - a listening, emotional support, information and supplies service, run by students for students. 

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                  Resources

                  Eating Disorder Booklets Illustration

                  Leaflets

                      Books Illustration

                      Books

                      The below books/authors were recommended by those with lived experience of eating disorders:

                      • Hope Virgo
                      • Emma scrivener 
                      • Jenny Langley
                      • Tina McGuff
                      • The Invisible Man - A Self-help Guide for Men With Eating Disorders, Compulsive Exercise and Bigorexia
                      • Samuel Pollen - author of The Year I Didn’t Eat
                      • Christopher Eccleston - I Love the Bones of You
                      • Rhik Samadder - I Never Said I Loved You 
                      • Andrew Walen - Man Up to Eating Disorders 
                      • MaleVoiced - this website is specifically for male ED suffers and has some brilliant resources including this great list of books 
                      • Beat have suggested books
                      • Mindful Eating: A guide to rediscovering a healthy and joyful relationship with food - By Jan Chozen Bays
                      • Life without ED by Jenni Schaefer
                      • 8 keys to recovery by Geneen Roth
                      • The Inside Scoop on eating disorder recovery: Advice from two therapists who have been there by Colleen Reichmann and Jennifer Rollin
                      • Goodbye ED, Hello Me: Recover from your eating disorder and fall in love with life by Jenni Schaefer
                      • Body Image Workbook
                      • The secret language of eating disorders, Peggy Claude-Pierre
                      • The War of art - Steven Pressfield
                      • Sick enough: A guide to the medical complications of eating disorders by Jennifer L Gaudiani
                      • Thinsanity by Glen Mackintosh 

                      Websites illustration

                      Websites

                                Videos illustration

                                Videos

                                      Podcast illustrationPodcasts

                                      Eating Disorders Group Image with a speech bubble saying \'And don\'t forget to look after yourself\'.

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