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Suggestions for Carers

On this page you will find helpful suggestions for carers. These suggestions have been contributed by experienced carers and professionals, and are intended for guidance only; they may not apply to all situations.

The pink text indicates a link to additional information about a particular area. Move your cursor over the pink text and click to access this information.

Sufferer

• If approaching a possible sufferer: prepare what to say, don't blame or judge, concentrate on feelings, stay calm, have resources to refer to, and be prepared for a negative response
• Avoid discussing food, appearance, weight and eating behaviours - do not get involved in power struggles
• Even if the problem is denied, you have opened a door - leave resources around and be patient, they will open up when they are ready
• Recovery may be long and hard, and will often involve set-backs and relapses, but it is always possible
• Remind the sufferer repeatedly that no matter how bad it gets, you love them and care for them unconditionally
• Remember that even simple comments like "you look good today" can be interpreted by sufferers as a criticism of their body - instead comment on how much energy they have, how healthy their hair looks, or things they have achieved, to build up their self-esteem and teach them to value themselves for who they are and not how they look
• Make sure that you counter any negative remarks the sufferer makes about himself/herself with positive comments, and make sure the positives focus on their achievements, personality and skills rather than appearance
• If another family member is on a diet or healthy eating plan, don't talk about it in front of the sufferer and don't obviously consume low-calorie or diet food and drinks in front of them, as this can trigger their eating disorder further
• Offer to help them get professional support when they are ready - go with them to appointments if they are worried or find these difficult
• Encourage them to continue involvement in social activites (not involving food) and hobbies - this can give them aims, goals and a sense of achievement

You (The Carer)

• If you feel angry, upset or frustrated deal with your feelings away from the sufferer by talking to a friend, the Beat helpline, your GP or a counsellor - you are entitled to your own support too
• Be a good role model - eat and exercise healthily and show you are happy in your own skin
• Don't take things the sufferer says or does personally, and don't blame them or resent them - they haven't chosen to be ill and they don't mean to take it out on you
• Being a good support means taking good care of yourself - it is okay to have a bit of time to yourself to enjoy every so often, and this will help you to recharge your batteries
• Accept that recovery has to come from within the sufferer
• If the sufferer says or does something hurtful, don't retaliate - simply reaffirm your love for them
• Contact your local carers' service to find out what support and help you could be entitled to - Carers UK estimate that people caring for loved ones without payment save the economy around £87 billion a year, which is the equivalent of a second NHS! You could be entitled to benefits such as the Carers' Allowance - to find out more use the links in our Looking after yourself section
• Get a Carer's Assessment so you can tell Social Services what help and support you need - to find out more please visit the Direct Gov website and see the Assessments for carers pages
• Don't keep the illness to yourself - although it is difficult to tell others when you are still coming to terms with it yourself or are worried about the stigma, you will probably be surprised at how understanding other people are and will feel a lot less isolated and lonely if you have someone to confide in
• Try to explore how differently one person can view a situation from another person. It can be incredibly frustrating when someone cannot see things the way you can, but if you try very hard to understand their viewpoint you may open up a whole new perspective, and they might do the same in return!

Family

• Be consistent in family behaviour - set clear boundaries and work together as a unit
• Accept roles may have to change, sometimes permanently
• Ask what you can do to help, don't assume
• It is okay to concentrate on other family members' needs sometimes - they deserve love and attention too
• Playing music or games can help to diffuse tension at meal times
• Share the caring role - taking it in turns will help prevent you getting over-tired, angry or frustrated
• Ensure that everyone in the family has a couple of people outside of the situation that they can talk to and confide in; this will help them cope with the pressures that having an ill family member can bring
• You might like to look at our information leaflets and show them to your family. There are leaflets for under 8s, 9-12 year olds, teenagers, and adults. The leaflets were written for people whose brother or sister has an eating disorder, but the information in them is useful for other family members and friends too. The leaflets can be found here.

 Food and Meal Times

• Ask the sufferers’ treatment team for guidelines on meal times to ensure you are providing continuity in their care
• Consider making a meal time agreement with the whole family – plan in advance approximately what time you will eat, who will be there, and what the menu will be so everyone knows what to expect. Agree not to talk about portion size, calories, fat content and diets
• If the sufferer offers to help with food shopping or cooking and you feel it is inappropriate, politely turn down their offer and ask them to help with setting the table or washing up instead
• Allow the sufferer to take responsibility for their own actions – for example replacing foods they have binged on or cleaning up any mess they make
• Celebrations sometimes involve a lot of food and can be particularly stressful for a sufferer – it might help to find an alternative way to celebrate, such as going for a relaxing stroll in their favourite park or spending the day watching films together - make a plan together of what you will do to help if the sufferer is really struggling at social events or meal times
• Even when the sufferer is making progress in treatment, returning to the home setting might be difficult as they are used to using old coping mechanisms here and may feel under pressure to show improvement - try to provide a calm, light atmosphere and ensure the sufferer knows you love and accept them unconditionally
• Keep conversation neutral, talk about fun things, and avoid topics to do with weight or appearance. Remember that happiness is contagious, so keep smiling and maintain a positive mood even when you are feeling differently inside
• Spending time together after meals can help distract sufferers who experience the urge to over-exercise or carry out purging behaviours – watch TV, play a board game or read a book quietly
• Inevitably some meal times will be disastrous - remember this is the eating disorder trying to maintain control of the sufferer, so try to remain calm and do not engage with arguments or bargaining. Get together later on to talk about your feelings and how you can learn from the situation, to reduce the likelihood of it happening again
• Informing the sufferers’ treatment provider of events at home can also be helpful – ask them for suggestions about how to cope with difficult situations
• Although it is difficult for you to understand the sufferers’ behaviour and feelings, remember that for them it is very real – instead of trying to reason with them, ask them about their feelings and try to see their point of view
• If the sufferer refuses to stick to their meal plan or the meal you agreed with them, consult with a healthcare professional to decide how best to tackle this - each sufferer is an individual and there is no solution that works for every case - if you ever feel their health is in immediate danger, do not hesitate to call emergency services for help
• You are not their dietician or therapist, and you should not try to take on these roles – try to enjoy the sufferers’ company as you did before and don’t panic about getting things wrong or making the odd inappropriate remark – you are only human too!

Professionals

• Communicate with others who might be able to help - teachers, employers, and the sufferers' care team - don't let the eating disorder thrive on secrets
• Do ask the treatment team if there is anything you are unsure of
• Write down any questions you have and take them with you to appointments - don't be afraid to write down the answers too for future reference
• If you feel NHS services are failing you and the sufferer, visit the PALS website to find out more about how to make a complaint and resolve problems
• If you have tried PALS and need to take further action, try writing to your local NHS Trust and your local MP - if the problem is still unresolved after this, then contact the Ombudsman who will look into complaints from an independent, impartial point of view
• For more information about what to do when you feel that services are failing you, access Complaints and Disputes in the 'Useful Information' section

 General 

• Be honest and open, and communicate
• Learn all you can about eating disorders - this will help you understand the sufferer better, and prepare for the journey ahead
• Reading about other people's experiences can help to remind you that recovery is always possible
• Do call emergency services if you feel the sufferers' life is at immediate risk
• There is a wealth of information on the internet, just make sure you are getting it from reliable sources!
• Keep a note of useful websites and contact numbers
• Research into eating disorders might help you understand why people develop them, and that it isn't anyone's fault
• Find out about support groups in your area, and if there is one near you go along as soon as possible
• Don't expect to get the answers for your own situation from a few leaflets or websites - it just isn't like that! Instead, research eating disorders as well as you can and try to talk to other carers. Not everything works for everyone, but taking in ways of coping and things that have been helpful to others will give you lots of options, and by gently and patiently trying different things, you may find a way forward that works for your family