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MumsnetGuestPosts (MNHQ) Wed 13-Jun-18 12:39:06

"How would I know when I had reached the peak?" Author Nancy Tucker on her 13-year-struggle with eating disorders

Author Nancy Tucker details her 13-year-struggle with eating disorders - and the strength she found in meeting and interviewing young women with a range of mental health problems. Nancy will be joining us here to answer any questions on Wednesday 20 June at 9pm.

Nancy Tucker

Author of That Was When People Started To Worry

Posted on: Wed 13-Jun-18 12:39:05

(32 comments )

Lead photo

"The snake-like tightening of the eating disorder around my body felt like I was scaling a mountain, kicking away the rubble of ‘hunger’ and ‘flesh’ and ‘need’ as I clambered higher and higher. But how would I know when I had reached the peak?"

When writing about anorexia nervosa, people often describe a ‘descent’ into illness. To me, the snake-like tightening of the eating disorder around my dwindling body never felt like a downward slide: it felt like a climb, like I was scaling a mountain, kicking away the rubble of ‘hunger’ and ‘flesh’ and ‘need’ as I clambered higher and higher. How would I know I had reached the peak? I would be empty, skeletal and horribly sick. That would be my apex; that would be my success.

My ‘anorexia story’ is depressingly commonplace. At 11 I was a chubby pre-teen, embarrassed by a body that felt too soft and too big, embarking on a diet that was too rigid and too extreme. By 13, I was a ghost. My friends had fallen away, unable to comprehend my strange, silent coldness. A bitter smell hung around me as my body released the chemicals produced by starvation. I ate a handful of cornflakes once every three weeks and called it control. It wasn’t control. It was self-slaughter.

After seven years of anorexia, I swung into bulimia. I puffed up and filled out and felt more hollow than ever. I gained weight but lost all traces of self-respect, hating myself more with every crazed, frantic binge. If anorexia is coldness, then bulimia is heat: a sordid, sweaty fug that enveloped me wherever I went. In my mind, bulimia tarnished everything I experienced or achieved. I left school with fine exam results, but they didn’t count, because I was bulimic. I had a place at a good university, but it didn’t matter, because I was bulimic. The sun was shining and the air was warm, but I stayed inside, curtains closed, because I was bulimic.

I wrote my first book, The Time in Between, at 18. Purging the darkness of my eating disorder experience was cathartic, but not curative. The book was published when I was 21, and six months later I started university, bulimia stubbornly in tow. What surprised me was not the relentlessness of my own demons: it was that, all around me, other young women were struggling with similar demons. University-wide internet support groups for depression, anxiety and eating disorders boasted hundreds of members, each person’s history intricate and alarming. I began to compare the posts on these forums with the superficial, sanitized depictions of mental illness that abound in mainstream media, and found a chasm of difference. I began to wonder whether I could tell these women’s stories more truthfully.

Sometimes the constant mental chatter feels so draining I don't want to get out of bed, but most days I put one foot in front of the other, and I make some right decisions, some of the time. I think of the warmth and respect I felt towards the women I interviewed, and I try to feel some of that emotion towards myself. Slowly, I get better.


Over the following months, I interviewed around 70 young women about their experience of various mental health conditions, from post-traumatic stress disorder to borderline personality disorder. As well as a handful of students from my own university, I spoke to women from schools and colleges, in employment and out of work, from a wide range of backgrounds and cultures. Their stories were frighteningly dark, surprisingly humorous and universally touching. They were honest and brave.

From over 100 hours of recorded interviews, I set about compiling the narrative that would eventually become my second book, That Was When People Started to Worry. I did not want to write a verbatim report: most people did not want their own words published. Instead, I created a series of ‘characters’, each suffering from a different condition and each representing a composite of multiple women. The book gives a snapshot into the life of each character in turn, covering a period of weeks, months or years. Their stories are faithful to the experiences recounted by my interviewees, without softening or censure.

Writing and publishing That Was When… has been a privilege. The women I met over the course of the project were interesting and insightful, and it was an honour to be allowed to speak with their voices. My hope is that the book offers an insight into the torment of living with a psychiatric disorder, helping people to understand that these conditions are neither spurious nor minor. Such insight is vital for anyone who regularly interacts with a person with mental illness – and, knowingly or unknowingly, the overwhelming majority of us do regularly interact with people with mental illness.

It has been 13 years since my own demons took up residence, and they continue to linger. My body is normal, but my eating disorder rages on, disguising itself. Sometimes the constant mental chatter feels so draining I don’t want to get out of bed, but most days I put one foot in front of the other, and I make some right decisions, some of the time. I think of the warmth and respect I felt towards the women I interviewed, and I try to feel some of that emotion towards myself. Slowly, I move forwards. Slowly, I get better.

Nancy Tucker is the author of That Was When People Started To Worry: Windows Into Unwell Minds (Icon books, £14.99 hardback).

She joins us here on the bottom of this guest post for a webchat on Wednesday 20 June at 9pm. Post your questions here in advance if you can’t make it on the day.

By Nancy Tucker

Twitter: @NancyCNTucker

TheSausageEmperor Mon 18-Jun-18 11:29:27

I've no questions, just wanted to say that I love The Time in Between and have reread it a few times. Interested to read That Was When People Started To Worry.

AsleepAllDay Mon 18-Jun-18 12:24:12

As someone struggling with some of what has mentioned on this post, this book sounds incredible and I will look out for it

Feelingstrongly Mon 18-Jun-18 16:50:41

You state that you still live with an eating disorder- do you put this down to the NHS - ie fault in the system/treatment or that it is your personal struggle that hinders you from recovery? Do you have propositions for eating disorder treatment options?
I will look out for your books. Thank you- for raising awareness in mental health, sadly I feel we as a society are too judgemental and too far from any acceptance/solutions.

jhb2013 Mon 18-Jun-18 19:49:45

Is there anything that anyone could have done (family, friends, school, doctors etc) which would have stopped you from having the eating disorder or do you think that your personality leant itself to bring more susceptible to expressing your anxiety/unhappiness in that way?
Once you were in the eating disorder was there anything that anyone could have done to get you out of it?

melodybirds Tue 19-Jun-18 03:04:48

Did you find a difference in attitude from family or doctors regarding your two diagnosis?

What do you think the biggest misconceptions are about having an ED?

What stops you from full recovery?

friendlyflicka Tue 19-Jun-18 23:02:50

I suffered from anorexia as a teen and kind of eventually saw it as something I would have to get over or die. But I have noticed increasingly older women with anorexia. I don't know if this is 'a thing' or if it is just coincidence,

waterlego Wed 20-Jun-18 08:39:11

Thank you for sharing; your books sound really interesting.

I have an acquaintance who is currently recovering from a very long hospital stay with life-threatening problems caused by her eating disorder. She has gained weight thanks to being drip fed. When I saw her recently, I said: ‘You look so well!’ and immediately regretted it, as I could see instantly that for her, well = fatter. Which is absolutely the case- she is fatter than she used to be, and thank goodness.

But what could I say to encourage her, without it being taken to mean: ‘you’ve got bigger’. Any suggestions appreciated.

Sophionaliv Wed 20-Jun-18 09:42:57

I have binge eating disorder and Bulimia. I emotionally binge as I have nothing else in my life other than being mum to 3 selfish teen DD's. I have gained yet again around 2 and a half stone since Christmas, hate every cell in my body and mind but just cannot seem to stop. I have seen my GP, who had referred me on to the eating disorder team, as I had not heard back from them (3 months) so she is writing to remind them. I joined a health club and go the pool/spa most days to swim, trying to do something for me, but even this isn't taking away the overwhelming urge to binge. Other than your books that I will purchase do you have any other advice on who or what I can go to for advice. Thank you

dorisdog Wed 20-Jun-18 13:08:13

I second the question: Is there any intervention that would have helped you when you were young, to stop?

messybun Wed 20-Jun-18 15:18:36

As the mum of two DD's I worry about my children becoming ill with an eating disorder when they get older. Is there any advice you can give?

dupainduvin Wed 20-Jun-18 18:23:16

a body that felt too soft and too big - that describes it perfectly. I'm pushing 40 and still struggling to find a 'normal' relationship with food.

Like others, do you have any advice for parents? I'm not sure anything could've stopped me, the talk therapy I had wasn't particularly effective.

NancyTucker Wed 20-Jun-18 20:57:59

Hi everyone, Nancy here! Thanks for all the questions so far, I am looking forward to answering them.

NancyTucker Wed 20-Jun-18 21:00:38

TheSausageEmperor

I've no questions, just wanted to say that I love The Time in Between and have reread it a few times. Interested to read That Was When People Started To Worry.

Thank you so much for your kind words about The Time in Between. I really hope you enjoy That Was When… I found it such an interesting and involving book to write, and I hope I have done the various women involved some justice.

NancyTucker Wed 20-Jun-18 21:01:32

AsleepAllDay

As someone struggling with some of what has mentioned on this post, this book sounds incredible and I will look out for it

Thank you! I really hope you get a copy and find some comfort in the stories xx

NancyTucker Wed 20-Jun-18 21:03:05

Feelingstrongly

You state that you still live with an eating disorder- do you put this down to the NHS - ie fault in the system/treatment or that it is your personal struggle that hinders you from recovery? Do you have propositions for eating disorder treatment options?
I will look out for your books. Thank you- for raising awareness in mental health, sadly I feel we as a society are too judgemental and too far from any acceptance/solutions.

As is usually true with a complicated situation like this, I think there are many reasons why my recovery has been protracted and – as yet – incomplete. By the time I received any specialist help at all I was already very unwell, as when I first saw my GP she more or less sent me away without any sort of help or guidance as my weight was not terribly low. I think this is a very common experience. The fact that specialist help didn’t come until I was very unwell meant that the eating disorder was already very entrenched, and I was unwilling (and felt unable) to give it up. That was the start of many years of anorexia during which I really made no progress at all. Now, struggling with bulimia, I find the options for NHS treatment so limited. There is so little provision for bulimia and binge eating disorder within the NHS, which only compounds the feeling many people have that ‘non-anorexia eating disorders are not serious’. In fact, they are incredibly serious.

However, it’s also true that I probably could have made more progress sooner if I had been more willing to commit to recovery. Throughout my adolescence I clung to my eating disorder, completely unwilling to give it up, and now I have lived with the eating disorder for so long that I don’t know how to give it up. I am a great deal better than I used to be in many ways, but the eating disorder does still consume a large part of my life. I have come to use my eating disorder to deal with any type of painful emotion, and that makes it very difficult to contemplate letting it go.

I think, in general, eating disorder treatment would be much improved if we were not so set on diagnosing specific eating disorders (separating anorexia/bulimia/binge eating etc.) because ultimately they are all part of the same pathology, they just manifest slightly differently. I also think there should be more provision for intensive treatment (possibly day patient treatment), so that patients who are seriously struggling can still live at home but can attend a service for much of their time (and most of their meals). During eating disorder recovery you do need a great deal of support, but I think inpatient treatment is often counterproductive (especially for young people).

NancyTucker Wed 20-Jun-18 21:03:40

jhb2013

Is there anything that anyone could have done (family, friends, school, doctors etc) which would have stopped you from having the eating disorder or do you think that your personality leant itself to bring more susceptible to expressing your anxiety/unhappiness in that way?
Once you were in the eating disorder was there anything that anyone could have done to get you out of it?

This is a very good question. I do think I was susceptible to developing an eating disorder: as a child I was very highly strung, struggled to cope with my emotions and tended to think in a quite black-and-white way, which feeds an eating disorder. I also had quite a lot of independence and responsibility from an early age, which made it very easy for me to develop anorexia. I think perhaps if I had had parents who were more aware of what I ate and more insistent that I ate enough, anorexia might not have taken hold in the way it did. By the time I was about 12 I was in complete control of what I ate, and I barely ate at all. I do sometimes think I would not have become so ill if my parents had insisted that I couldn’t hurt myself in that way.

Once I was entrenched in the eating disorder it was very difficult for anyone to free me from it, because I felt attached to it and was devious in the ways I tried to preserve it. My Mum has been a huge support to me throughout my illness, and was always willing to listen to me talk for hours. That support has not necessarily made me better, but I think it has kept me alive. Now, I have an extremely strong relationship with my Mum, largely because we went through (and still go through) my eating disorder together.

NancyTucker Wed 20-Jun-18 21:04:01

melodybirds

Did you find a difference in attitude from family or doctors regarding your two diagnosis?

What do you think the biggest misconceptions are about having an ED?

What stops you from full recovery?

I find a huge difference across the board regarding anorexia vs. bulimia. I think many people – doctors and laypeople – regard anorexia as severe, and bulimia as less severe. I think people associate anorexia with willpower and bulimia with lack of control. I also think people regard bulimia with some level of disdain, and anorexia with some level of awe.

One of the biggest and most insidious misconceptions about eating disorders is that they are always physically obvious – i.e. a person with an eating disorder will be very thin. In the majority of cases, a person with an eating disorder will be of a normal weight or overweight. Anorexia is amongst the least common eating disorders, and people with anorexia are not always remarkably thin (e.g. during periods of recovery). Also, I think it is a misconception that one can measure severity by weight – i.e. if one patient is thinner than another then their eating disorder must be worse. I know I have been at my most mentally unwell when at a high weight: that is the time I would say my eating disorder was ‘worst’, because that was the time I was most mentally tortured.

I believe that I will be fully recovered eventually, but at the moment I think I still have an attachment to the eating disorder which is hard to relinquish. It feels like a companion, and one that has been with me for many years. I struggle to know who I would be or how I would manage without the eating disorder ‘crutch’. I also think this phase of life (I’m in my 20s) is quite difficult anyway, because it feels unanchored and unsettled. I wonder if that feeds into my continuing bulimia.

NancyTucker Wed 20-Jun-18 21:04:19

friendlyflicka

I suffered from anorexia as a teen and kind of eventually saw it as something I would have to get over or die. But I have noticed increasingly older women with anorexia. I don't know if this is 'a thing' or if it is just coincidence,

I think it is true that anorexia is, ultimately, something you have to get over if you don’t want to die (or live a life not worth living). It is interesting what you say about older people with anorexia – I’ve not particularly noticed that and am not sure why it would be!

NancyTucker Wed 20-Jun-18 21:04:42

waterlego

Thank you for sharing; your books sound really interesting.

I have an acquaintance who is currently recovering from a very long hospital stay with life-threatening problems caused by her eating disorder. She has gained weight thanks to being drip fed. When I saw her recently, I said: ‘You look so well!’ and immediately regretted it, as I could see instantly that for her, well = fatter. Which is absolutely the case- she is fatter than she used to be, and thank goodness.

But what could I say to encourage her, without it being taken to mean: ‘you’ve got bigger’. Any suggestions appreciated.

It is so tough – of course you are glad to see your friend looking well, and that comes from a good, kind place! But it is a difficult thing for a sufferer to hear. I think it is better to make no reference at all to physical appearance, as any variant of ‘well’/’healthy’ is likely to cause upset. I suppose I would just say that you are pleased to see her, and leave it at that. I think you could also say that it’s good to see her smiling (if she is smiling!), that it’s lovely to talk to her, that you’re really happy to be able to spend time with her again now that she is less critically ill. I suppose anything that indicates ‘I really value you as my friend’, and nothing that indicates ‘I have looked at your body and can see that your shape has changed.’

NancyTucker Wed 20-Jun-18 21:05:05

Sophionaliv

I have binge eating disorder and Bulimia. I emotionally binge as I have nothing else in my life other than being mum to 3 selfish teen DD's. I have gained yet again around 2 and a half stone since Christmas, hate every cell in my body and mind but just cannot seem to stop. I have seen my GP, who had referred me on to the eating disorder team, as I had not heard back from them (3 months) so she is writing to remind them. I joined a health club and go the pool/spa most days to swim, trying to do something for me, but even this isn't taking away the overwhelming urge to binge. Other than your books that I will purchase do you have any other advice on who or what I can go to for advice. Thank you

I am so sorry you are having such a difficult time. This sounds extremely painful for you. I have so much empathy – I still often feel the self-hatred related to weight, coupled with the complete inability to make the changes that might help me feel better. It is a horrible trap to be caught in: one that really undermines your self-confidence. It is really shameful that you haven’t heard from the eating disorders team yet. If you are brave enough, I would go back to the GP and insist that you need to be seen urgently. I hate being pushy, but sometimes it is the only way! And you really shouldn’t have to suffer like this for such a long time.

It is great that you are thinking of doing some exercise. Perhaps you could try to think of any swimming etc. you do as a bonus, rather than a chore, and don’t beat yourself up if you don’t do it as often as you think you ‘ought’ to. Of course, eating regularly and eating nourishing food will help reduce binge eating in the long run, but I’m sure you know that so I think it’s patronizing to say it again. I think the most important thing you can do is try as hard as possible to be kind to yourself. This includes doing nice things for yourself whenever you can, but more importantly talking kindly to yourself (in your own head). If you’re anything like me, you probably have a very unkind and punishing internal monologue, which is enough to get you down in and of itself. I would advise that, when you catch yourself having a negative thought about your weight or any other part of you, try really hard to stop yourself and tell yourself you won’t bully yourself anymore. Also, although it is very hard when your self-confidence is low, I do think binge eating is often helped by spending time with friends, family and other people you love. There is less space for binge eating, practically and emotionally. But also, it’s important to remember that you have done nothing terrible by developing a problem with food. Think of all the awful things you could have done – you could have hurt people or stolen from people or done really wicked things – and you haven’t done any of that. All you have done is had a hard time and gained a bit of weight. It feels like an awful thing to you, but it’s actually really minor. You have NOT done anything terrible, and you have no reason to feel so ashamed.

NancyTucker Wed 20-Jun-18 21:05:41

dorisdog

I second the question: Is there any intervention that would have helped you when you were young, to stop?

In terms of interventions when I was young (pre-eating disorder), I think I might have benefited from some more discussions within the family about the importance of eating well to stay healthy. I didn’t eat very healthily when I was young, and mealtimes were extremely tense as my father was very authoritarian and hostile. I think that caused me to associate food with stress and discomfort, which made it easy for the eating disorder to take hold. I think I might have been more robust if my family had been more strict about regular mealtimes, and if mealtimes had felt like a less unpleasant experience.

NancyTucker Wed 20-Jun-18 21:06:04

messybun

As the mum of two DD's I worry about my children becoming ill with an eating disorder when they get older. Is there any advice you can give?

In terms of advice, I think most children just want (and need) to hear that they are loved unconditionally, no matter what they achieve or do not achieve. A huge part of my eating disorder has been feeling that I needed to be perfect, because I felt that losing weight was the way to achieve perfection. I think there is far too much pressure on children at the moment, and it is only getting worse. Children need to know that, yes, it’s good to be diligent and to work hard, but it is more important to be a kind person than a clever person, and more important to have good relationships with others and be well-liked than to win prizes and be ‘the best’. I think wherever possible it’s also important to comment on the qualities you admire in your children (e.g. sense of humour, generosity, determination), rather than telling them they’re beautiful. Of course they are beautiful to you and it’s fine to tell them that on occasion! But I think it is really helpful to praise children for the qualities we don’t often notice, such as kindness, as well as those we place emphasis on, such as appearance and intelligence.

In terms of eating disorder protection specifically, I think regular family meals are important. It’s also important to try not to talk in terms of ‘good’ and ‘bad’ foods, and not to comment on other people’s bodies. Try to convey the message that neither food nor weight has a moral value, and that it’s best to eat a bit of everything and let your body be however it wants to be.

However, I think it’s also very important to stress that, if a child does become ill with an eating disorder, it isn’t anyone’s fault. I know my Mum often reflects on what she could have done differently prevent me from becoming ill, and I never find it a very useful line of thought. People can become unwell with any number of mental health difficulties and it is very rarely the fault of their parents – or anyone else (except in extreme circumstances). It can also be very difficult for parents to bring about recovery, and a child remaining ill doesn’t mean that a parent has failed. The main thing any parent can do in the face of any mental illness is to offer as much time, patience and reassurance as possible, and – as I said above – unconditional love. Of course many people who are unwell need professional help, and parents can be pivotal in recruiting that help, but I think the specific role of the parent is to support and love.

NancyTucker Wed 20-Jun-18 21:08:18

dupainduvin

a body that felt too soft and too big - that describes it perfectly. I'm pushing 40 and still struggling to find a 'normal' relationship with food.

Like others, do you have any advice for parents? I'm not sure anything could've stopped me, the talk therapy I had wasn't particularly effective.

The 'normal' food relationship seems so alien when you're used to a very abnormal relationship with eating and your body. To a certain extent, I feel the same - that nothing could have stopped me - but I think there are a few things my parents might have done to make me more robust, as outlined above. But ultimately I think the main thing that has determined by path so far has been my own feelings about recovery vs. staying ill, rather than anything my parents have said or done.

dupainduvin Wed 20-Jun-18 21:25:39

i'm not sure if we are supposed to reply but thanks nancytucker, I agree with your comments on routine meal times - all of my issues were easy to develop at boarding school and due to parents that again, gave us a lot of independence and were very liberal in all respects. I've noted this, I try and set regular times for my kids but it's hard when committing to a plan of meals is something I struggle with.

Your comments on the misplaced focus on categorization of anorexia/bulimia/b.e.d in the treatment was exactly what I experienced, and I certainly felt that my bulimia was due to me lacking the self control to be anorexic (another failure). They all stem from the same place, I agree.

I remember feeling that I didn't want to recover, because I didn't want to get 'fat' again, and I remember cringeing when people told me I looked well. It's better to praise a specific thing like a haircut or a coat or someone's jewellry than make statements that someone obsessed with their weight will mis-intrepret!

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