Superordinate theme
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Subordinate theme
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Eating difficulties were influenced by sibling’s AN
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Emotionally charged mealtimes at home
Comparison and competition
Increased focus on body image and diet
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Changing eating patterns to manage difficult emotions
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Feeling responsible for a sibling with AN
Restricting eating to manage emotions
Traumatic experiences increasing the need for control
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Systemic pressure to be thin
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Family beliefs about diet and body size
The thin ideal
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Finding appropriate support was difficult for participants
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Being the well sibling
Difficulties getting support
Types of support that may have helped
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Eating Difficulties were Influenced by Sibling’s AN
Emotionally Charged Mealtimes at Home
Mealtime supervision, a key part of treatment for AN, is often very difficult for people with AN who feel fearful and stressed at the prospect of having to eat, and for their families who are tasked with enforcing meal plans. Several participants spoke of how this caused them to associate mealtimes with stress.
Sophie: “There was a lot of stress a lot of crying and shouting and throwing food and things, which doesn't really help when you have your own digestive issues.”
Participants also discussed the difficulties of having to follow controlled eating plans and show a good example.
Holly: “I felt sort of trapped by it, it was always like ‘you have to eat enough to show her a good example, you have to’.”
Losing control of their eating patterns and diet appeared to be a trigger for some participants to restrict their eating as a way of feeling in control as soon as they could. Four participants spoke of restricting their eating once they left home and were no longer being pressured to eat.
Sophie: “When I went away to university I just kind of saw it as like an opportunity that like they can't worry about me now, I’m not at home anymore so I saw it as free rein to sort of restrict a lot more dramatically.”
In contrast, Andrea stopped restricting her diet when at university as she learnt more healthy patterns of eating from those around her.
Andrea: “I think it was just kind of seeing people having like three meals a day and like having snacks in between and not worrying about like the fat content and certain foods.”
The pressure to eat a lot when at home was also a means of reassuring parents that they were well. However, Heather found that this led to her restricting before and after a visit home, despite having a mostly healthy eating pattern now.
Heather: “I was always very conscious that when I would go home I’d be eating loads and so I’d have to be careful the week after, in my head I’m always like ‘you're going home, you're going to be eating loads make sure you don't eat too much in the week after or week before’.”
Comparison and Competition
Body shape comparisons were discussed by all female participants but appeared to be particularly important for participants who had only one female sibling.
Sophie: “She was 13 at the first diagnosis and I was 16 so it wouldn't have made sense any way to compare our bodies, but I definitely did, and I definitely felt very jealous of her in a sick sense.”
Sophie’s account suggests an awareness that wanting to be as thin as her sister was unhealthy but that there was a part of her that still aspired to be that way. For Andrea, this comparison was an imagined sense that others, including her sister, were expecting her to look a certain way, underpinned by a societal norm of thinness as an aspiration.
Andrea: “The feelings of just like she's older than me like, quite substantially older than me and she's wearing smaller dress sizes than I am, like what does what must she think of me, or what does that mean about me.”
A desire for thinness was not the only basis for comparison; Holly spoke about restricting her eating to appear strong and perfectly healthy rather than thin, but also spoke of feeling competitive with her sister.
Holly: “I’m naturally quite competitive as well, so as soon as her eating disorder started comparing then I’d naturally compare back you know, want to be better.”
This sense of competition could lead to a cycle of siblings triggering one another to restrict their eating. This was described by Chloe who developed AN first and struggled whenever she noticed her sister becoming thinner.
Chloe: “We went shopping and she was tiny, and I remember that made me feel rubbish again and I started to restrict my eating, I don't know what it is, is it a fear of she's going to be thinner than me?”
In some cases, comparisons between siblings were explicit. Rachel described her sister becoming violent towards her out of jealousy when she became thinner.
Rachel: “She'd had to gain weight and she was a healthy weight, and I went in quite underweight which she didn’t like so she used to beat me up.”
Rachel did not have a desire to be thinner than her sister but stated that experiences like this brought up difficult emotions that perpetuated her mental health struggles and restrictive eating.
Increased Focus on Body Image and Diet
Even for those who did not directly compare their bodies to their sibling’s, the increased focus in the home on diet, exercise and body image could be contagious.
Paul: “The constant conversations about food have definitely made me think about food and I’d mirror that behaviour and check what’s in food and obsess a bit more.”
Paul did not have eating difficulties before his sister became unwell but had experienced anxiety; an increased awareness of food became something for him to worry about and want to have control over.
The focus on diet and weight within the home when someone has AN can be inescapable and for participants this could make recovery difficult. Rachel discussed the need to have space from her sister and to prepare mentally for visiting her as she is aware that visits can be a challenge in her recovery.
Rachel: “In my recovery I haven't been able to forget about having an eating disorder because my sister speaks to me every day about it, and I have to visit her every week when she weighs five stone and has a tube up her nose so it's just really difficult to ever move on from.”
Changing Eating Patterns to Manage Difficult Emotions
Feeling Responsible for a Sibling With AN
Participants took on responsibility and guilt for their sisters eating disorder for a range of reasons including not noticing it early enough, thinking that they caused it and being unable to save them.
Andrea: “I've felt like I could be the one to like save her, like if I was as thin as she was or just maybe not as thin as her, but maybe like an acceptable level of thinness to her and she saw me eating, then she might think it wasn't so bad to eat.”
For many this assumed responsibility resulted in failed attempts to help their sibling, bringing about complex emotions.
Rachel: “I just had too much hatred to myself, I think I blame myself for (sister) as well. I told myself if anyone can get her better I will, so I think mine was more a hatred towards myself.”
Over several years of witnessing a sibling with an eating disorder, through cycles of relapse and remission, emotions and attitudes towards a sibling may change. Andrea explained her changing emotions following her sister’s relapse after having tried many times to help her.
Andrea: “I think at the start I was kind of like her champion, ‘I'm there for you, I will do anything for you’, and it was after a few years of her consistently lying to me about it all that it just I just felt quite betrayed.”
Others took on responsibility for their sibling as a way of helping their parents.
Sophie: “I wouldn't say I parented as such, but I definitely felt very responsible, felt very guilty, I felt like it was my job to help and stuff which you know I didn't mind helping, but I do think the stress again played a big part in later mental health issues.”
Hannah felt that her attempts did help her sister recover, however, this placed a high responsibility on her to help.
Hannah: “I think it actually brought us closer together because she sort of, not listened to me, but I could reason with her more than what my mum could.”
Restricting Eating to Manage Emotions
All participants described having strong emotions towards their sibling when they were unwell with AN. For some, the intensity of emotions and difficulty knowing how to manage them led to increased anxiety, depression and restrictive eating patterns as a way to cope.
Sarah: “I think a lot of it would just be in times of stress when I felt like I needed to control something.”
Stress was often borne out of fear and uncertainty of what might happen. Many participants feared for their siblings’ lives when they were unwell and struggled to know how to cope with this feeling.
Bobbi: “I found it incredibly scary at the time, it felt like an overload of fear all the time that something was going to happen long-term and that she was essentially just killing herself slowly.”
For many participants emotions were complex, changing and difficult to discuss.
Sophie: “I definitely think that anger is a difficult emotion to process, especially because I can feel very guilty over anger, like the anger that I felt towards my sister, I still feel very, very guilty over that and I haven't forgiven myself for the way that I treated her.”
Although participants described restricting their eating to feel more in control and to manage emotions, they were also aware that this compounded the guilt they felt for acting in a similar way.
Paul: “I am such a hypocrite because I’m just endorsing this behaviour but then on the other hand trying to stop this behaviour.”
Traumatic Experiences Increasing the Need for Control
Bobbi and Rachel spoke about emotional and physical abuse from their parents which they thought may have influenced their illnesses. No other participants mentioned any forms of abuse. However, several mentioned other difficult childhood experiences, such as marital discord and divorce in parents shortly before or after the development of an eating disorder. Several participants cited this as a factor in triggering difficult emotions and wanting a sense of control that could be achieved through restricting their eating.
Chloe: “I think the trigger was when I turned 14 my mum had an affair, and I think the shock of it was just you know really devastating as a teenager and I think my immediate reaction was, you know that's something I can control like I’m going to stop eating.”
Experiences of health issues either for participants or for their parents were also mentioned as factors increasing emotional distress and a wish to have more control.
Heather: “My dad had a heart attack when I was about nine and my sister was six, I remember my mum fully going on a health kick then… my mum was like we need to be healthier as a family.”
Systemic Pressure to be Thin
Family Beliefs About Diet and Body Size
Family scripts around a need to be thin and modelling from parents around eating was discussed by many participants as a possible antecedent to their eating difficulties. These included observations of parent’s approaches to their own diets.
Heather: “Mum does that thing, where she’ll also punish herself, she’ll be like ‘Oh well, I shouldn’t have that piece of cake, because I didn't go for walks today.”
There were also accounts of parents giving explicit instructions to their children to be thin.
Bobbi: “(My father) would very often restrict what we ate and how much of it we were allowed to eat, and there were a lot of different rules for everybody in our house because we looked different.”
Bobbi thought that instructions from her father on what she and her sisters could eat was a causative factor in all her sisters developing eating disorders.
Thinness as an aspiration is so ubiquitous in Western society that some parents may try to help their children with staying slim without realising the potential negative consequences of this.
Sophie: “(My mother) sort of said to me ‘Oh, you know you can try this diet that I tried when I was your age and that'll help’ and obviously she regrets that now, but at the time she just thought that was normal, like teenagers go on diets.”
This was not consistent across all participants; Holly remembers no unhealthy attitudes from her parents towards food whilst growing up.
Holly: “We’d never been restrictive at all at home, and I’d never seen my parents diet or anything like that.”
The Thin Ideal
Messages around the thin ideal were seen to be widespread in the media, schools and in general society. Viewpoints on thinness were often dissonant, with participants acknowledging that AN was an awful illness that they would not wish on anyone, whilst also holding aspirations towards thinness. Several were aware of this contradiction and spoke of the difficulty of wanting to manage their weight but not become unwell.
Hannah: “I didn’t like what I’d seen on her, I don’t think she looked good, she looked ill, I remember thinking I would never want that to happen to me sort of thing. But kind of very similar did.”
There were different ways of managing this dissonance: Sophie has learnt that it can be difficult for her to diet without it becoming unhealthy for her.
Sophie: “I always felt like you should straddle the line between being just you know just thin enough and go no thinner than that, and that was what I was like my sister is gone too much that way she let it get out of control, but I have it in control, I can just do it just enough.”
Other participants managed dissonance by distancing themselves from their sisters’ illness and minimising their difficulties.
Sarah: “You don't have anorexia because you know what that looks like so what are you doing, like feeling like you're kind of making a fuss.”
This initially increased Sarah’s wish to restrict her eating but this passed over time.
Sarah: “There were periods where I would have like imposter syndrome and I would be like well I’ve just got to like double down on this and I’ve gotta really restrict because then it will justify what I’m doing. But then, on the other side of that, probably towards the end of the periods, I would be like well I just need to stop, because this is ridiculous and I’m better than this”
An awareness of the possible dangers of trying to be thin and a worry about becoming as unwell as their sibling was protective in preventing further eating difficulties.
Heather: “I think I worry that if I was to get into the same habit as my sister like I’m very conscious of it, like I don't calorie count now, I don't weigh myself, I don't do any of that because I almost worry that I would end up like her.”
Finding Appropriate Support was Difficult for Participants
Being The Well Sibling
Talking about emotions in the family could be difficult as participants did not want to burden their unwell sibling with their problems or make their illness worse. However, for some participants, siblings could also provide a source of support, particularly when both had recovered from similar illnesses as this fostered a sense of shared understanding.
Bobbi: “We confided in each other a lot, we found a lot of support and love with each other.”
Participants sometimes found it difficult to speak with their parents about their difficulties and this could make it difficult for parents to be aware of the struggles of their other children.
Heather: “I thought, they’ve got one unwell child they don’t need another one, so I’ve just never really spoken to them about it.”
There was an awareness that parents may be struggling to cope themselves and participants did not wish to burden them with their feelings. Sarah articulated her role in trying not to put extra pressure on her parents.
Sarah: “Everyone's like rallying around to look after this person and you feel like you kind of have to be the mature one and, like not get into much trouble and just make sure that you're looking after things because you don't want to put extra stress on what is already going on.”
This led to increased difficulties with eating as an alternative way to cope.
Sarah: “It's like you don't know how to open up to these people around you so here's something that you can do to control everything that's overwhelming.”
A difficulty in discussing issues with parents may also have been due to a lack of time spent together as parents were busy supporting their child with AN. Andrea felt upset and angry that her needs are still never prioritised.
Andrea: “They always put her needs like in front of mine at my expense, like not just even like when it doesn't affect me, like when things you know would kind of harm me, it would be her needs first”.
However, other participants stated that their siblings’ illness brought them closer together as a family.
Sophie: “I think I actually became more dependent on my mum because of the whole thing and possibly her on me as well a little bit like we became close.”
The intense and continuous nature of AN means that carers are often subject to burnout and often siblings take on the role of offering support. Heather spoke about the isolation she felt when supporting her sister to allow her parent’s respite.
Heather: “It was just me and her and I couldn't really leave her in the house alone, so I was just trapped for a month with her the only time I went out was either to walk the dog or go to the shops it was just a bit of a hermit life.”
Speaking up about feeling overwhelmed could also conflict with a sense of duty and the values of participants, making it difficult for them to seek help.
Sophie: “I wouldn't have felt like I could say you know that it's a bit too much or whatever, because I did grow up in a Christian household as well, so it was very much like, you know, you should self-sacrifice.”
Although participants expressed a desire to support their family, at times this could feel overwhelming. Paul felt intense pressure at the need to be the one to support his sister as he worried that his family did not take her illness seriously. This has led to pressure within the family and a difficulty communicating his needs for fear of hypocrisy.
Paul: “I am the one person that she hates, because I am the one person who tries to interfere with the eating disorder and help. My mum says ‘just be her brother’ and I’m like, ‘well I could be her brother if you were helping her, and then I could stay out of it’.”
Difficulties Getting Support
Possible barriers to seeking support are numerous and several participants alluded to worries about being stigmatised, being unsure how to seek help or their needs not being great enough to need professional intervention. Andrea said that she struggled to ask for support because her parents were busy, and she was worried about being assumed crazy or being put in hospital.
Andrea: “I just thought I’d be in trouble I didn’t know what was okay, and what wasn't okay, in terms of the mental health spectrum.”
Despite therapeutic interventions being widely offered to siblings with AN and some participants attending family therapy sessions with their sibling, no participants in this study were offered individual support from a professional because of their sibling’s illness.
Most participants who had sought support pursued this themselves and either had private therapy or six sessions of individual therapy. Others participated in their sibling’s family therapy but found that this did not help in supporting them and could add to the difficulty of their sibling’s illness.
Sophie: “I would have liked it if I’d had one-on-one, but they didn't offer that, it was just as the whole group, and I think my sister found it really embarrassing as well, and I remember the counsellor was asking me about how I felt about my parent’s divorce in front of my parents. I remember thinking ‘How is this helpful for me?’.”
Types of Support that may have Helped
There was a desire amongst all participants for more support when their sibling became unwell. They suggested that individual support, education in schools and support groups might have helped them to understand and manage their emotions around the situation at home.
Andrea: “Just having someone to say ’It's okay if you're feeling xyz, it's normal to feel xyz even though it's like a scary feeling to have but it's normal and that's like in the normal experience, how can we help support you through that?’”
Support for parents to help them cope better with difficulties was also suggested as potentially being beneficial and may allow them to better support other siblings in the house.
Holly: “If my parents had some of the load taken off them, I feel like I don't know if my problems were serious enough to need serious psychological help, it was more I just needed the support of my parents.”
Despite a struggle for support, all participants in this study had learnt to manage their eating difficulties. For some this was due to having space from their unwell sibling or their sibling also being in recovery.
Holly: “I think the main thing was, that helped was just distancing in me being away at Uni and then that kind of allowed (sister) to shut me off, as part of the disorder and resolved all those issues.”
This signifies both a desire for a range of different supports to be put in place but also an acknowledgement that even with extensive support, sometimes getting distance from an unwell sibling and space to recover may be essential.