Messages to family and carers about eating disorders

Supporting a young person with an eating disorder can be very difficult for parents, siblings and carers. Here young people talk about the messages and advice they wanted to pass on to worried carers.

‘Don’t ignore it. But don’t be forceful on children. Just try and get a really close relationship with them and try to understand what they’re going through.’ -Ewan

The young people we spoke with all acknowledged how hard things had been for their carers. It had been difficult for them to know best how to help. As Hannah O said, reaching out to a person with an eating disorder can be difficult as the person doesn’t necessarily feel ill or like they need or want help. Katie described how hard it must be for parents to watch their child so unwell, feeling like they were ‘dying in front of their eyes’.

It was only after they started getting better that many people felt they were fully able to appreciate the support from family and carers. Laura described how parents can be worried about saying or doing the wrong thing and Anna felt parents often get blamed for the eating disorder. Hannah O pointed out how things could be much harder to deal with if people lacked information and understanding about eating disorders.

‘Be there and show that you care’

The most important thing young people wanted to tell worried parents and carers was to ‘just be there’. People stressed how important it was for family to be available, to listen and to show genuine care to the young people. They said it might not always be easy for parents or carers to reach them but it was still really important for young people to see that they made an effort. This could bring down barriers and eventually make it easier for young people to open up when they felt ready.

Laura encouraged parents to talk to their children if they were worried. Young people might find…

Age at interview 18

Gender Female

Age at diagnosis 18

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I think for parents it can be really difficult, because you don’t always, I know I’ve come across parents before when like, when I’ve done stuff for B-eat we’ve, I’ve spoken to some parents and they worry about saying the wrong thing. But I think when you’re kind of suspecting that your child’s got an eating disorder rather than just sitting back and not really saying anything, I think you do, as much as you might cause conflict by approaching them, your child, I think that kind of saying that you’ve noticed that something is going on and that you’re there to talk to and as much as at the time they probably won’t accept it.

Because I know I wouldn’t have, but I think if that had been said to me it would have been a lot easier for me to go to them for help because I wouldn’t have felt like I was bringing it up completely from the beginning. Because I would know that they kind of knew, whereas if you don’t say anything and you don’t make any comments and, then if like your child does get to a point where they want to admit that there’s a problem it’s a bigger deal because they, even though the parents might have actually realised, they just might not have said anything. But because like the child might not have, might not realise that their parents have realised. It makes it feel like they’re bringing it up completely from the beginning, so it’s a bigger deal.

But I think if parents kind of say and like do notice and do kind of say the things that they’re noticing, and just generally making their child aware that they are noticing changes, I think it does make it easier in the long run, even if it makes it a bit more tense at the time. Because they will be angry and probably in denial and they’ll probably say stuff that they wouldn’t usually say, but then that’s like the eating disorder speaking because yeah. I think a lot of the time you have to be aware that it’s not them just being horrible and just wanting to argue with the parents. A lot of it is because they’re struggling so much that it is something that’s consuming them and causing them to be as maybe hostile as they are, or as secretive.

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Many urged parents to form open and trusting relationships with their children from a young age so it would be easier to raise any concerns down the line. When the relationship had broken down or was more distant, they encouraged carers to try and learn to understand their child, however difficult it might be. Nikki said it was more helpful to have the space to talk about feelings and emotions rather than to only focus on food and eating.
Young people advised parents and siblings to express their love and care, especially during difficult times. Elena said helping the young person build their confidence, could be key to helping them feel better about themselves.

‘Don’t blame’

Young people wanted their problems to always be taken seriously and not feel ‘belittled’ or that their concerns were ‘brushed off’. They also warned adults to never blame the young person for their eating disorder. Having an eating disorder could be difficult for all the family, causing tension and arguments. When people were unwell they could seem reclusive, hostile or secretive. They also reminded parents to be aware of how skilful they could become at hiding things, when in the grip of an eating disorder. They said it was important to realise that this was caused by the eating disorder, not something young people did ‘on purpose’. Katie pointed out ‘it’s not something somebody would choose’ to do.
‘For parents I would say remember that it is not your daughter/son who is behaving horribly. It is the eating disorder. My mam used to say it was like I was possessed and she had to remind herself that her daughter was in there somewhere.’ -Rachel
Some also made the point that parents should not feel guilty for the child developing an eating disorder.

Harriet encouraged parents not to dwell on the past but focus on the situation here and now. Not…

Age at interview 19

Gender Female

Age at diagnosis 15

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I think sometimes parents feel like they could have done something, they could have stopped it or something they’ve done when they were bringing their child up but even if it was, I mean there’s nothing you can do about it. You have to deal with the situation as it is now and just support them, try not to get angry and shout and get sort of emotional overly emotional. You can just be there for them and take it one step at a time.

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People urged parents, siblings and carers to not get angry with them. Jasmin said getting angry would just push people away and ‘make things worse’. Steph said it was important to feel that parents weren’t acting against the child, but parents and child working against the eating disorder together.

‘Find what works for your child’

Many young people felt that their parents were the ones who knew their child better than anyone else. They encouraged other parents to have the confidence to trust their instincts, if they felt something was wrong. Young people talked about finding the right balance between stepping in to help and being too forceful, which could result in breaking trust. Some preferred their parents to step in quickly by for example taking them to the GP, even against their will. Eva said that the longer it was left, the harder it got. People pointed out that, when they were dangerously ill, being taken to the doctor had possibly saved their life. Others wanted their parents to take a more gentle approach and give them space. They said it was enough for them to know their family or carer was there when they felt ready.

Even though at first Eva was mad with her parents for taking her to the GP, she now feels…

Age at interview 17

Gender Female

Age at diagnosis 14

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Well if the young person, like if the parent was worried about taking the child to the GP in case the child doesn’t like them, in the end they’ll thank you. I thank my parents now. And they won’t be mad at you forever. Even if they are mad initially, you’d rather preserve your child’s health than think oh I don’t want them to be angry at me, and then they get really poorly because of it, because of you not taking them. Because sometimes it can be hard for them to take the step themselves because they don’t believe themselves to be ill.

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Suzanne encouraged parents to balance showing that they want to help with not being to be too…

Age at interview 16

Gender Female

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I don’t think a forward attack works because that can scare the child. But let your concerns be known and stuff, and maybe provide your child with information so that they can realise what they’re doing. And if the child pushes you away don’t be afraid, just give them space but be persistent. don’t be in their face frightening them, and making them push you away but don’t be all shy. Keep at it and because eventually or hopefully you’ll be able to get the child’s confidence when they see that you’re not gonna push them away and that you care about them.

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Elizabeth said her parents ‘tough love’ worked for her. This made her realise that she had to…

Age at interview 20

Gender Female

Age at diagnosis 12

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So they [parents] always said to us from very early on it’s your illness and you’re going to have to get over it yourself. Ultimately we can help you but we can’t get better for you.

And I think that was actually, it sounds harsh but it was a really good strategy because if I’m not the one who’s in, like who’s implementing change, if they’re doing it for me and I don’t actually really want them, I don’t actually really want it, then I’ve got to learn to, then I’m not, it’s not going to work and ultimately I’m gonna have to learn like that as an adult on my own.

So that was massively useful.

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Laura suggested parents should always seek advice on what to do when they suspect something is wrong with their child.

‘Get support for yourself’

Many young people urged carers to seek support for themselves. People described how their parents had benefitted from talking to other parents. This kind of support is available through different organisations. They also encouraged parents to seek support from health professionals or just to do things they enjoy so that their whole life wasn’t taken over by their child’s eating disorder.

They also urged carers to find as much information as possible from B-eat or NHS websites, hospital leaflets, eating disorder and mental health charities or research papers. Suzanne also urged carers to provide their child with appropriate information and help them understand eating disorders better. Zoe said the important thing for carers was to be aware of how common and how serious eating disorders can be.

Hannah O described how hard it can be to support someone with an eating disorder when the person…

Age at interview 22

Gender Male

Age at diagnosis 13

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I think any eating disorders are a hard thing to deal with if you don’t much about them cos they’re scary and just really hard. So I think just get just any kind of professional help if you can because or go online, B-eat website, that sort of thing. Just like arm yourself with as much knowledge as possible to and just don’t give in cos that’s the horrible thing like it gets so hard. It could be easy just to give up but just learn as much as you can and just see a health professional if you can and go on B-eat website and just stuff like that really.

Like you said that, you know and at that time, the child can be very challenging and it can be can be really difficult to know how to best help them.

Yeah, it’s like they don’t want help anyway so why would you even like most ill people want to get better like any other illness. That’s why anorexia is so hard and difficult to understand because you have just like a cold or something you want to get better but with like this it’s like the person doesn’t even know they’re ill so that’s I think the patience is another thing that you need.

Absolutely, yeah.

it’s frustrating but get there eventually, hopefully.

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Beat and Young Minds have helplines for parents, carers and other adults worried about someone with an eating problem visit our resources section for phone numbers and links.