Nancy Tucker, author of ‘The Time In Between: A memoir of hunger and hope‘ is a 21-year-old currently recovering from Anorexia – her journey is explored in her book. Nancy kindly agreed to answer a few questions from me to help provide her perspective on how friends and family might help a loved one with an eating disorder. I hope that you find what she has to say brings you hope, inspiration or practical ideas. I found her responses rather beautiful.
Parents, teachers and friends are often worried about saying or doing ’the wrong thing’ and making things worse. Did this ever happen in your experience? In your opinion are there things that people should avoid saying or doing during illness or recovery?
It’s so tricky, because – whilst I don’t want to appear to be discouraging friends/family from addressing their concerns with their loved one – I do sometimes feel it is impossible to do or say the right thing when it comes to eating disorders. I know that when I was descending into anorexia, when people commented on my weight loss in a light-hearted way – ‘You’d better not lose any more weight or you’ll disappear altogether!’ – it gave me a perverse sense of achievement, whilst if they voiced their worries with more seriousness I immediately became very defensive as I feared they would try to deter me from continuing with my ‘diet’. I think in general, hard as it is, steering clear of weight-talk altogether is probably the best plan, and focusing instead on what is going on underneath – e.g. instead of saying, ‘I’m worried about you, you’ve lost a lot of weight recently’, try, ‘I’m worried about you, you’ve seemed very sad and withdrawn recently’. I think right from the very beginning it is so important to disallow weight from being the ‘central issue’ – because it’s not, it’s just the byproduct.
During recovery, I would again say that avoiding commenting on weight loss or gain is vitally important, only more so. At all costs avoid praising sufferers on weight gain/loss (whatever the goal of treatment is) – they don’t need to be made any more conscious of their bodies’ shape and size. Also, try to avoid making assumptions about sufferers’ level of recovery based on their outwards appearance/behaviour; during anorexia recovery one of the most difficult things for me was the fact that as soon as I gained weight and made an effort to rejoin the world, I was bombarded by people commenting on how glad they were that I was ‘better’. It made me feel pressured and panicked, because inside everything was still in such a high level of turmoil. You really have to let the sufferer be the leader on this one, I think – if they refer to themselves as ‘recovered’, or talk about their eating disorder in the past tense, it’s fine to mirror that, but don’t be the one to make the decision as to whether or not they are ‘well’.
Is there anything helpful that people can say or do?
As I said above, I think voicing concern based on non-aesthetic and non-eating-related factors – e.g. ‘I’m worried about you. You seem tired/you’re spending a lot of time on your own/I heard you crying the other day/I think you might be unhappy’ – is a really good way to show sufferers that they aren’t being neglected or overlooked, but is less likely to provoke an automatic defensive response than bringing up weight or food (at least to begin with). I also think friends and families ought to be open with sufferers when it comes to their capacity to sympathise vs. empathise: one of the most helpful things my best friend ever said to me, with regards to my eating disorder, was, ‘I don’t understand what it feels like, so I won’t pretend that I do. But that doesn’t stop me believing the feelings are real for you, and wanting to help you with them.’ There is something very refreshing, I think, about people who are prepared to listen to and accept without immediately trying to rationalise thoughts and feelings which, on some level, even sufferers themselves know to be irrational.
It sounds like you often felt very alone with your illness. Were there ever moments when someone helped you to feel less alone?
The period I write about in the book – from when I was eleven to about nineteen – was definitely a very lonely one. As I describe in the narrative, my Mum was a huge source of support and succour throughout that time, and did definitely make me feel less alone, but I think it is always going to be tough if you only have one person you can trust and depend on.
Nowadays, I still consider myself to have an eating disorder, but I feel much less alone with it. Since sharing the book with my two best friends our relationship has really grown in terms of the openness and honesty with which we can now address my illness, and I also have a couple of other wonderful friends with whom I feel I can be more or less completely truthful about how things are. And, of course, now I am also lucky enough to have a therapist whom I trust wholeheartedly and to whom I feel very close, which has really changed everything in terms of how supported I feel. Obviously to a certain extent having an eating disorder is always lonely, because it is an illness which turns you in on yourself and traps you inside your own head, but I think I am very lucky in terms of how low my levels of actual alone-ness are these days.
What was the most helpful advice you were given during the recovery process?
I think the thing which was most important for me to hear when I was younger and attempting recovery, and which I still try to keep in mind now, is that no one cares how thin I am; how much I do/don’t eat; what size clothes I wear – ultimately all of those things I spent so long obsessing over were meaningless, irrelevant, and – it might sound harsh, but actually I think it’s important – shallow. When I find myself slipping into spirals of food/weight/body obsession these days, I try to be quite strict with myself, and force myself to acknowledge what a waste of time it is to be obsessing over things which fundamentally don’t matter.
I also find it really helpful in my continuing recovery to try to strip food/eating of the moral value I attached to them for so many years. I have to work really hard to pick apart the knee-jerk conviction that starving myself = good, feeding myself = bad, but once I do pick it apart I realise how unfounded and nonsensical it is. This has also helped me a lot with bulimia, too: in order to rid myself of the crippling guilt and shame associated with bingeing/purging, I had to strip it of all the value judgments with which I was associating it, leaving it on a level with starvation rather than the former being deplorable and the latter admirable.
What was the least helpful advice you were given during the recovery process?
I used to find it pretty defeating to be told that I needed to eat and get well in order to be able to ‘get back to normal’. This happened a lot at CAMHS, which infuriated me because I felt it betrayed the extent to which they didn’t really know or understand anything about me: if they had listened even vaguely, I think they would have heard me say that the ‘normal’ situation from which my eating disorder had removed me – at school, at home – was not a happy one, and not one to which I had any interest in returning.
What would be your advice to sufferers / parents in the lead up to a first CAMHS appointment
To parents, I think I would say go with a clear idea of your main concerns and the sort of help you feel you need (e.g. Would family therapy be helpful? Would your son/daughter benefit from someone to talk to on her own? Would it be helpful to see a dietician?) I also think it’s important to be honest, with yourselves and with those you see, about how able you feel to continue to manage things at home. If you feel overwhelmed, exhausted and hopeless it is really important to voice those feelings, not as a request for your son/daughter to be hospitalised, but as a means of communicating that things are serious and you need help urgently.
Advice for sufferers is tricky, because I remember how resistant I was at that first CAMHS session (and, to be honest, at most of the following sessions too!) and I don’t know if anyone or anything could have lessened that resistance. I suppose what feels very important to say is that if you feel you would be more comfortable talking without your parents present you are completely within your rights to ask to ask for time alone with whoever is conducting the assessment (this is something which should be offered anyway, as a matter of course). Most people approach this sort of appointment on the defensive – I know I did – but, if possible, it’s so important to try to remember that the people at CAMHS or any other service of the like do want to help, and accepting their help is not a sign of weakness.
Did you learn anything from your battle that you don’t think you’d have learnt otherwise?
I can honestly say that almost every single thing of value I have learnt in my life, I have learnt – directly or indirectly – through having an eating disorder. My beliefs, values, career plans, perspective, character… Everything about me has been shaped by my illness, and I would say almost all of that ‘shaping’ has been positive. I suppose my eating disorder has made me fragile and perhaps more introspective than I might otherwise have been, but I also think it has taught me some massively important lessons about the relative importance and unimportance of ‘surface’ things, like money and exam results, and has enabled me to develop a level of self-knowledge which I wouldn’t want to be without. As a result of my eating disorder I have also had to become much more open to the fact that it’s not always possible to progress through life how you think you ‘ought’ to, or how other people seem to, and that that’s actually fine. When I wasn’t well enough to go to university last year it did feel, briefly, like the end of the world, but in fact the past academic year has been one of enormous excitement, growth and development for me, for lots of reasons but most notably because of the publication of my book, which I don’t think would have been possible – or, at least, certainly wouldn’t have been nearly as enjoyable as it has been – had I been at university. I’ll go to university this coming autumn, starting my degree just as most of my friends are finishing, and it isn’t of any consequence to anyone that I’m twenty-one not eighteen. That’s been such an important thing for me to learn: that these things really don’t matter.
If you could travel back and have a conversation with yourself at the beginning of all of this, what would you say – and do you think there’s any way you could get the former you to listen?
I think this question is so difficult for two reasons. Firstly, I remember my eleven-year-old self pretty clearly, so I know I was stubborn as a stain and probably wouldn’t listen to a word my present-day self said! Secondly, because of all the ‘gains’ I’ve made as a result of my eating disorder discussed above, I can’t honestly say I would necessarily want to stop my former self from going down the path she did. Which feels like such a crazy thing to say, because my eating disorder has been, at times, such a hellish experience, and one which continues to haunt me to this day – but I think that is the truth. I wouldn’t want to change it. So I suppose I would just want to say to former-Nancy, ‘The next ten years are going to be really, really tough. At times you won’t be able to believe quite how tough they are. It’s going to be really, really hard. But in ten years’ time you’ll be making the decision that you don’t want to change anything about those ten years – not one single thing – which means there’s going to be an awful lot of good, and right, and important in there too.’