Parents and family

The young people we talked with often lived at home with their families. Being diagnosed or treated for an eating disorder often had a major impact on their parents and carers, brothers and sisters and on extended family. Family relationships could also be affected when young people had moved out.

Young people said that family relationships were involved with their eating disorder in complex ways. Some felt that family issues in the family had played a role in them developing an eating problem in the first place. Parents and other family members were also often among the first to realise something was going wrong and to encourage people to get help. For some people, parents had been actively involved in treatment (e.g. family therapy) or took responsibility for care at home. Others had never even told their parents they had an eating problem. Whichever way, having an eating disorder often had a deep impact on how young people felt about their parents and family.

Annabelle said she only realised later how helpless her mum must have felt when she was very ill.

Age at interview 22

Gender Female

Age at diagnosis 14

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What about your Mum? Do you know how she reacted?

Well I think she was relieved to get a diagnosis, she was, because I think, because that’s when they then referred me on to an outpatients unit which was a great relief to her. But yeah, I think she must have felt, it’s only now I realise how like helpless she must have felt, knowing there was something wrong but not getting the right answer from the GP and not, even though she was trying she just couldn’t control what I was doing, nor could I control it. But she must have just felt so out of control. Frustrating

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Although it was often difficult for people to know why they had developed an eating disorder, many had had a difficult relationship with food early in their childhood. Some felt that their attitudes to food had been learnt at home. Disrupted family lives, or experience of divorce, violence and death of a loved one within the family could play a major part in them developing an eating disorder. Some of those we spoke with said they had never felt understood or cared for by their family see ‘Early experiences of food and eating’).

Impact on family relations

Living with an eating disorder can have a practical and emotional impact on family relations. Young people described a mix of emotions such as sadness, concern, guilt and anger towards family members.

During the worst times, the eating disorder could take over every aspect of family life. Sometimes parents took time off work to be able to care for their child at home. Parents and siblings had to “accommodate” to the needs of the person with the eating disorder and were sometimes unable to go on holidays or spend time together outside of the house. When Zoe was very ill she was “constantly monitored” by one of her parents; Charlotte’s parents took the locks out of the bathroom; and some people were “locked in” the house and constantly followed to make sure they weren’t purging, exercising or running away.

Because of the disruption and distress eating disorders could cause, there was a lot of tension and arguments particularly at mealtimes. Understanding eating disorders was often hard for parents as they had to watch their child behave in ways that seemed irrational and destructive and didn’t know how to help.

Maria described the pain her family had to go through when she was ill. At worst, nothing they…

Age at interview 18

Gender Female

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But they could have said, You know, eat this or I’ll shoot you. And I would have just, had, not eaten it. And at that point I remember, I didn’t, I don’t think I regretted not having it because, which is terrible but I think I did feel bad I think seeing my family like that, I did feel really bad because it made me think of how they must be feeling, because obviously I’m their daughter and I’m killing myself. And that must have been dreadful.

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Anorexia nervosa changed Annabelle’s family dynamic to constant arguments about her eating.

Age at interview 22

Gender Female

Age at diagnosis 14

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You said at the time there were lots of arguments at home. What was family life like?

Strained.

Was it around eating?

Yeah very much. Because aside from that our family is usually okay, thought we have, I have tiffs with my brother or sister, well I used to when I was younger and you know maybe my parents would argue about the washing up now and again. But generally it was good. But the eating disorder completely changed things and I became really tense and really awkward, and meal times when all the family sits together, supposed to be you know really happy, chat about how your day’s been or you know if you’re at breakfast what the day’s going to be like, but it just wasn’t like that anymore, it was like the focus was on me, what’s Annabelle eating, is she eating enough? Let’s try and cater for Annabelle. What do you want eat Annabelle? Will you eat this? Will you eat that? And you know sometimes my Mum would say, You’re not leaving the table until you’ve finished that she started making me drink these supplement drinks, and I think she was just so frustrated; she was almost trying to force them down my throat. She was like, You’re not leaving the house until you have that. I’ll ground you It was, hard. It was really, and it was really upsetting for everyone I think.

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It could be difficult for young people to see what their families were going through. Zoe saw her dad cry for the first time when her parents took her into hospital. Seeing their parents upset and desperate could make people feel guilty. Many had wanted to protect their parents’ feelings. Chloe, Craig and Zoe all said that the main reason they got help for the eating disorder was for the sake of their families. Katie and Fiona-Grace were upset to see the negative impact of the eating disorder on their family members as they always wanted to “please” people and make others happy. Although eating disorders mainly affected parent-child relationships the stress of dealing with an eating disorder could cause arguments between the parents too;

“Mum and Dad would have a massive argument about it and they’d be arguing all the time cos my Mum felt like my Dad was doing the wrong thing. I never want to see that happen again and it just caused problems between them and watch them being upset all the time.” -Jasmin

One of the most important issues in the family that the eating disorder affected was trust. Because of the illness, many young people described becoming secretive, increasingly hiding their thoughts and behaviour the more ill they became. The more parents tried to help the more pressure some people experienced.

It took Rob and his parents a while to find the right balance between “space and support.

Age at interview 17

Gender Male

Age at diagnosis 14

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It took us a long while to get the balance really because at first when I came home they were suffocating really. I mean we we’re fairly close knit but they were really, really kind of like overprotective.

And so we had to get a balance. I totally understand that as well but it was it was, made things difficult for me and but for me, I think it was almost knowing when things were difficult and being, knowing and then making sure that that I knew they were there. But not forcing me to talk to know to confront me all the time and giving me space when I needed it. I guess in the same way, in some ways it’s like any teenager really it’s, you know, mixed combination of space and sort of support and nurturing but not so much that they dominated me and but so that they gave, they’d trust me to do things.

For myself but also that they’re if I needed them and vice versa, I’m there if they want to talk about something or whatever so.

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Breaking the child’s trust could be very damaging but was sometimes necessary to keep them safe and get them into treatment. Elizabeth emphasised how important honesty was. She said, for example, that tricking children into eating more calories could damage the trust. On the other hand some said that in they could now see how desperate their parents were and understood why they had felt the need to risk losing their trust. People could become trapped in a vicious cycle’ the less people felt they could trust their parents, the less their parents trusted them, this could lead young people to become more secretive. Some people who were under 18 were told they couldn’t get treatment without parental consent and felt pressure to tell their family about their problems.

Suzanne didn’t want to tell her family about eating problems. Her mum found out when a counsellor…

Age at interview 16

Gender Female

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Of course, you know I’d never told my mother or my step-dad about the bulimia, so of course I didn’t want them to know. But you know the counsellor was very he couldn’t really you know advise me that you know you couldn’t go for treatment unless you have parental consent because I was under the age of 18. So that put you know a bit of a, it was a bit of a problem for me. And I decided to say no really because you know I just wasn’t prepared to tell them just yet. Or if at all.

But they did phone anyway and they left a message on the answer machine, of course my mother was quite sort of surprised, and didn’t know what it was about, and I think I did tell her and she didn’t really sort of respond to it.

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When trust was broken between parents and children it could leave a lasting impact. Young people said their parents had become so distrustful that they struggled to move on and trust their children again, even as they were getting better.

“I think my parents won’t let go of the eating disorder because even if I say, “Oh I’m not hungry,” they can’t just accept that you’re not hungry if you’re actually not hungry. Because everything’s sort of labelled and interpreted in a certain way which I can find frustrating sometimes.” -Katie
 

Rachel described how difficult it was for her parents to learn to trust her.

Age at interview 24

Gender Female

Age at diagnosis 15

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I think my mam finds it difficult to let me make my own decisions and mistakes and not knowing everything about me anymore. Ironically my dad understands a lot more now; he reads articles on eating disorders all the time and is even giving advice to a colleague at work whose daughter’s friend is ill. My mam says she’s finding it hard to come to terms with the fact everything is okay now and she regularly gets upset or angry with me. There is hardly any trust between me and my parents, regarding food. I returned from Australia healthy, yet I am constantly questioned if I have eaten that day or shouted at if I go out with no tea even though I will eat something when I come back in! It frustrates me because I am 24 now.

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Steph could understand why her parents were still worried about her. They had lost one child and…

Age at interview 23

Gender Female

Age at diagnosis 14

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I mean even now, I spoke at a carers’ meeting a few months ago and my Dad says, you know, Even now, if I don’t see Stephanie for a couple of days, you know, if our paths don’t cross, he will still think, well I wonder what she’s eating. You know, I thought that was really peculiar because I’m fine now, you know, there’s no problem, yet my Dad, Mum and Dad still have that fear, but I think that will always be with them. You know there’s always; because I was so ill and so close to death, and I having lost one child, the worst thing that could have happened would have been to lose another. So that, I think my family and my friends are always going to be on their guard, and I’m going to be always going to be on my guard as well, because it could so easily sneak back in. But, you’ve, when you make that conscious decision to say, No I’m not going to let you do this to me anymore, it can’t fight that, you know, so.

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Support

The support that family could offer to young people could be better than anything else. Rachel received “constant support” from her parents, Hannah O said her parents “stuck by” her through everything and Sara described her family as “integral” in her recovery. Rob said that even though his parents didn’t necessarily understand anorexia nervosa they were always supportive and remained “a close knit family”. Some said their parents had done a lot of research into eating disorders and taken steps to help by, for example, exploring treatment options.
For some, the difficult experiences brought the family closer together. For some, the family situation was easier after they moved out of home, to university for example, and their relationship improved.

Eva’s relationship with her parents changed. When she was unwell she used to be very dependent on…

Age at interview 17

Gender Female

Age at diagnosis 14

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So I was like very dependent on their visits then. But it’s been rocky really because I hated them while I was in hospital because everything they did was wrong. But that wasn’t me that hated them, it was my eating disorder. I hated them if they were late, I thought, I remember they went on holiday once and I was livid with them because I wasn’t going too. But now I look back at it and think they needed time out, you know they shouldn’t have to put their lives on hold because I’m putting mine on hold. So I was like really annoyed at them then, and felt like, Oh they’ve deserted me, they don’t love me really And all this, but they do because they’ve always been there for me.

And my relationship with them now is good, it’s definitely like improved a lot now. It was probably best when I was in the last hospital I was in because they saw that I did actually want to get better for the first time and I was working with, we were working with each other rather than I was working against them. Me thinking they were working against me, so that’s the best it’s been really.

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Zoe felt that the difficult experiences strengthened her relationships with her parents. Now they…

Age at interview 23

Gender Female

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I think my relationship with my parents, I have a very good relationship with both my mum and dad and very, since I think both since both episodes it’s made me much more open and I think, in a way, it’s strengthened our relationship. Like I will say to my mum even now, you know, if we go out shopping, I will explain to her and she knows that it’s not easy for me and that I do have a tendency to buy clothes that are too big and she’s very good at, whilst she doesn’t want me to buy clothes that are really tight and are going to make me feel uncomfortable, she tries not to allow me to buy, well, not allow me, but she supports, she she’ll say, Oh, that looks a bit big, I would get the next size down But she realised why I want to get the bigger size. So we’re very open.

Yeah, we have a very open relationship and I can tell her what I’m feeling and I’ll tell her when things aren’t so good and when I’m feeling that I can’t wear jeans at the moment or whatever. So that’s good and so and with my dad. I mean I think some things like that, maybe less so with my dad just because…

Sure.

The relationship between a mum and a daughter is slightly different. My dad, you know, the second time round when I had that slight sort of relapse or dodgy period a while back, he was very good. He’s much more, and I think it’s maybe the dad role, very practical and, you know, If there’s anything I can do, if you want to be picked up in the evenings, come home for dinner and drop you back, that’s fine, not a problem So I think, in a way, it’s really, it’s really helped, it’s really strengthened our relationship.

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Lauren’s experiences also changed her mum who has become more confident and spoken publicly to…

Age at interview 23

Gender Female

Age at diagnosis 20

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We’re great. My mum and dad, I’ve changed a lot as well, they’ve been through a lot and I think that they’ve become more understanding of people. They’ve sort of realised their own kind of calling in life as well I think. My mum’s become so much more confident. She would never speak kind of out about anything. She was always really shy. She wouldn’t travel anywhere and through what we’ve been through she’s, you know, stood up at healing conferences and spoke to carers. She’s been speaking to other carers on a personal level and helping them. She’s coming to New York as well and You know, just she’s become more confident and I think cos she’s realised that, you know, she doesn’t when this life is gonna end or what’s gonna to happen in her life you just kind of have to take each day as it comes and live for the moment, kind of thing, and not be worrying about all these silly things and just putting life into perspective a little bit. And taking a few risks because they’re so worth it if you do and if it works out, you know, it’s gonna be great opportunities and I think that’s really changed her and it’s been good to see that change in her. I think that’s come through my illness because she’s had to be stronger and she’s had to be more confident and she had to do that.

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Role of family in treatment and home care

Family can play an important part in helping people get treatment for eating disorders in a variety of ways:
  • Enabling people to attend hospital appointments,
  • Providing support
  • Having open conversations
  • Going to family therapy with them. (For more about people’s experiences of the pros and cons of family therapy see ‘Staying in hospital’).
  • It was often family members who were the first to pick something was wrong and tried to encourage people to get help (see  ‘Realising something is wrong and seeking help’).

Sometimes people were looked after by their parents at home. This could be because they couldn’t go into hospital (because they didn’t want to, or didn’t fit certain criteria) or, for example, during the period between discharged from hospital and being well enough to return to school. Rachel was glad not to be admitted to hospital and was cared by her mum fulltime’

”There were no beds available so I was looked after by my mam 24/7. I owe my life to my mam as without her I would not be here today.” -Rachel

Sometimes parents had to take time off work, or a career break, to look after their children. Zoe’s parents worked “shifts” looking after her and she was with either one of them at all times. At this stage, parents were often fully in charge of what people ate at home, often with guidance and meal plans from the hospital.

Brothers, sisters and grandparents

“There was obviously the fighting at home that upset her [sister] sometimes, and I can remember her crying once because she thought I was going to die when I was really unwell.” -Katherine
Eating disorders can have a big impact on siblings (brothers and sisters), grandparents and the wider family. Growing up in a family affected by an eating disorder can make siblings feel ignored, scared and worried about their sibling’s health. This can leave them feeling angry and bitter. Some said they understood why their siblings might feel resentment when family life seemed to revolve around one person’s needs. Others felt that there had always been competition between the siblings or they had always felt like the “problem child”, which partly contributed to their eating problems. It was important that parents tried to give attention to all the children in the family, ill or not.

Zoe understood how difficult it was for her sister to cope with how the eating disorder affected…

Age at interview 23

Gender Female

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I mean my sister, I think had a really tough time in that, obviously, all the attention was on me because I was unwell and I think she found that quite difficult, quite understandably really because my parents were very, very concerned about me but she obviously, had things that she was worried about, not, you know, normal teenage things.

And she was, yeah, my parents were trying to, you know, trying to do their best and give her lots of attention and give me all the all the attention I needed but it just, it was tough for her and I can remember her getting very angry with me often and she refused to, after a while, she refused to eat with me, eat in the family, with the family because it was just, she couldn’t she didn’t want to be involved in it at all.

And I think she got quite resentful of me and quite angry. Understand, totally understandably because I was tearing the family apart, basically. And all the attention was on me, every mealtime was a battle. Mum and dad were in tears, not sleeping, you know, stressed and for someone who hasn’t had an eating disorder and don’t have much insight into it, it does seem, you know, I’m doing it to myself. I accept for her, it probably looked quite selfish. I was, yeah, doing it for attention. All the sort of, yeah and so it was very difficult for her. And we did have a couple of sessions of family therapy but I wasn’t really into it at all because I think I was just past the point. So yeah, I think it was just I think she found it very, very difficult.

How did your relationship then change over the years?

With my sister.

With your sister.

So I think, to be honest, the worst part of our relationship was that period when before I went into hospital, when I was hell in our house. My sis-it wasn’t something that’s really I don’t feel, affected our relationship long term.

Since I started getting well, things started going back to normal. She I think she was quite relieved when I went into hospital and I don’t, I think it’s interesting, because I don’t think she ever, at the time, really expressed how worried and upset she was.

Like I thought she’d just she’d removed herself from the family meals. I thought she didn’t care but actually, it turned out that it was actually, quite difficult for her, you know, understandably I guess, to see her sister in this state. And just like in a in a mental health hospital.

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People often felt distant from their siblings and didn’t want to talk to them about their problems. Some said their sisters or brothers were too young to really understand. Zoe said she had never realised what a big impact her illness had on her sister until her mum had told her how upset her sister had been. Some had siblings who also developed an eating disorder. One woman said her and her sister both becoming ill with an eating disorder was the result of problems in the family.

Lauren said her sister has been the bravest in the family.

Age at interview 23

Gender Female

Age at diagnosis 20

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Yeah, we’re really close. We get on really well. She’s being my bridesmaid next year so we’ve been doing some wedding planning and stuff for it, which has been great, but yeah, she’s always been just there, like she’d never say anything. And through my illness, she wouldn’t really talk to me about it but she was always just there and I think she’s probably the bravest actually, because for all that time I was getting all the attention and she was just starting university and that going through those changes herself, but she had to deal with. Oh no, everybody was asking about Lauren and everybody wanted to know about what I was going through and everybody wanted to make sure that I was okay and seeing that stress and strain in the family I think that must have been quite difficult for her but she never let it show. And she never did sort of stroppy sister thing or said, Oh, why, what about me And she managed to get through her uni and stuff and she’s training to be a nurse and, you know, she did one of her studies on eating disorders and was able to ask me about it and things and I think.

She’s yeah, she’s just been great and I think it’s probably made her a bit stronger as well and, and come through her life a bit better.

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It could be even harder for grandparents to understand eating disorders than it was for parents. Some said there was a generation gap with grandparents when it came to talking about mental health issues. Katie said her grandparents were from an “era” when difficult things weren’t really talked about. People often didn’t speak to their grandparents about eating problems and Nikki said her parents didn’t tell anyone else in the family, even when she was staying in hospital. Katherine didn’t speak with her grandparents face to face but knew that they talked about her weight behind her back. Some said their grandparents had made comments in passing about weight or food portions without realising how upsetting and insensitive people could find this. Others had different experiences. Rebekah had very supportive grandparents who she moved in with. Even though her grandmother had struggled to understand eating disorders or self-harm, she had always wanted to support her in every way she could.

There were also people who chose not to involve their families. Some had tried telling their family but felt their parents didn’t want to know. Others had never told their family because they didn’t want to upset them, or because they didn’t feel close and comfortable enough with them to talk about difficult issues. Emily didn’t really want to tell her family about the eating disorder because she felt her family life played a part in her developing an eating disorder.

Craig’ s eating disorder is a taboo subject at home because no one quite knows how to deal with…

Age at interview 25

Gender Male

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What about then later on, how are things with your family now?

it’s kind of ignored a little bit again. When, when I got a little bit better they kind of, they just made the point that I looked better. They just said, Oh you look healthier and then it’s been ignored since then. So it’s still kind of very much a taboo subject. Nobody knows how to deal with it, so.

How would you want that to be, ideally, how would you want to deal with it? In a family or setting, or with close friends?

it’s a bit of a tough one actually. I don’t, I think if people make an issue out of it makes it worse, but at the same time if it’s ignored then you kind of feel like no-one cares so, it’s about making an issue of it but kind of being supportive with it, rather than being angry.

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There is no language for eating disorders in Nikki’s culture and she can’t talk about her…

Age at interview 20

Gender Female

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I was always out of my siblings I was always the big one. Out of my like extended family I was the big one. Pet names would be like fatty if it translates from like, but it was a kind of term of endearment thing, but it did stick with me.

I think as well like the culture, it’s not like, if I said to my Mum or someone, you know, don’t call me this, this bothers me Its like, Well no we love you, and it’s done you know And it wasn’t, there wasn’t ever a view to kind of looking after that I guess. Just from the cultural side of it.

Why do you think that is? That there wasn’t sort of like you said, you know, looking after it or kind of intervening like you said earlier?

The thing is right there’s no, I’ve honestly have come to realise you know there’s no, in kind of the language, there’s no translation for eating disorder. There’s no word for, you know, there, I think there is a kind of slang word for depression but there’s no word for anything to do with mood, mental state, someone having a mental health difficulty, anything like that. It doesn’t, if it’s not in the vocabulary it’s also not in the culture.

If someone’s fat then they’re just fat and that’s about it and you get all these kind of Grandma’s saying like home remedies, like drink soda water and do yoga in the morning. And you know and you have to kind of smile and get on with it. But there’s not a view to it kind of, it, food is thought of as something that keeps you going in your life, not ever something that you would ever have a problem with. You know, it’s, and I guess it’s like that.

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Nikki and her parents have been on a journey together. It’s been different for each of them.

Age at interview 20

Gender Female

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We’re all very strong personalities, but I think whether they accept it or not they know my life and what I’ve chosen to do with my life and, and they know that their choice is being there or not. And that they want to be there, well hopefully.

So would you say it’s a long process to have come to that point?

Oh absolutely. I’m not even, I don’t think its half way there or, to be honest, you know. But it’s I think, you do travel the road with your parents and it’s a different kind of, they have a different journey they may never ever understand what you’re going through, or they may understand kind of to different degrees, but they are your, like nature, like I mean if it’s not parents, it’s your friends and the closest people around you, and then they’re with you. And you have to acknowledge that they’ve been through something while you’re been through perhaps the worst thing, but they’ve also been through things with, alongside it.

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If you are worried about yourself or someone else and would like to speak to someone in confidence, see ‘Mental Health and Wellbeing Resources’ for list of helpline numbers.

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