Dear JULES,
Anorexia – in memory of Nikki Grahame
Executive Summary
This post doesn’t lend itself to an Executive Summary. It’s written in memory of Nikki Grahame, who lived most of her life with anorexia and tragically died on April 9th, 2021 at the age of 38.
The post covers the definition of anorexia from the Diagnostic and Statistical Manual of Mental Disorders and how this fails to capture the essence of the condition. It shares my experiences, of food as a means of control, as a teenager. It covers the incidence of, and prognosis for, anorexia and mortality rates from the condition – the deadliest of all mental health issues. Finally, I address the conundrum of anorexia and the challenge of recovery.
Introduction
The tragic death of Nikki Grahame was announced on Saturday 10th April 2021 (Ref 1). She had died the previous day – the same day as Prince Philip. Nikki was born in 1982 and was just 38 when she died. She became known when she appeared as a contestant in the seventh series of Big Brother UK in 2006. She was hugely popular and was voted back into the house after being evicted. Nikki was TV gold – bubbly, funny, unpredictable, and loveable. She had a couple of meltdowns that, 15 years later, still rank among the best ever TV moments. Nikki won a National TV award for most popular TV contender.
Nikki was also a person who lived with anorexia for almost her entire life. Her mother recalled that Nikki was seven when she started to avoid eating (Ref 2). Nikki was first hospitalised at the age of 12 after a suicide attempt. Nikki shared her experience of anorexia in two books, Dying to Be Thin (2009), and Fragile, which was published in 2012.
I met Nikki once in May 2010 and she called a couple of times afterwards when she was particularly low. We spent a few hours together at her attic flat and I got a glimpse into her routine and her relationship with anorexia. Nikki was keen to hear how I had overcome anorexia and I tried to share as much as I could that might help. However, the time I spent with Nikki unfortunately left me convinced that she would not overcome anorexia. One day it would overcome her. Nikki’s friends recently raised approximately £65,000 with crowdfunding to get her some urgent help. When I heard about this, I said to my husband, Andy, “I don’t think Nikki can be long for this world.” I was terribly upset, but sadly not surprised, to hear the news on Saturday.
What is anorexia?
The Diagnostic and Statistical Manual of Mental Disorders is the official manual for defining mental disorders. It is currently on the Fifth Edition (2013 update). It is published by the American Psychiatric Association (Ref 3).
The current requirements for the diagnosis of anorexia are (Ref 4):
“A. Restriction of energy intake relative to requirements, leading to a significant low body weight in the context of the age, sex, developmental trajectory, and physical health (less than minimally normal/expected) (Ref 5).
“B. Intense fear of gaining weight or becoming fat or persistent behavior that interferes with weight gain.
“C. Disturbed by one’s body weight or shape, self-worth influenced by body weight or shape, or persistent lack of recognition of seriousness of low bodyweight.”
For me, these points might be helpful to diagnose anorexia, but they fail to capture what anorexia is really about. I’m going to draw on my own experience in this note and also on the experience of people I have met who have experienced anorexia and shared their insights.
The one word that I would use to describe anorexia is control. I developed anorexia as a teenager. Yes, the condition started off as about weight. I was very sporty and had a hearty appetite and I developed puppy fat as I changed from a girl to a woman. A couple of thoughtless comments from people around me made me more aware of my size. I wasn’t overweight by any means, but changing shape came with an attention that I was too young to understand and certainly too young to welcome. Curves got in the way of sport and were an inconvenience rather than anything to be celebrated.
There is much criticism of ‘magazine culture’ and girls/women (and boys/men) wanting to look like the unrealistic models, but I didn’t see any magazines when I was younger. We didn’t have ‘Reality TV’. I wasn’t trying to look like anyone. I just didn’t like a couple of comments that were made. I went to a newsagents and I found a booklet called “how to lose weight.” The booklet told me that I needed to cut back by 1,000 calories a day to lose 2lb a week. That was when I first because acquainted with the 3,500-calorie myth.
The whole calorie counting thing was a piece of cake (lolz). I was mathematical and had a good memory, so I memorised the calorie content of the foods that I encountered and started counting calories. The weight initially fell off and then it slowed down and then it stopped. I continued being the sporty teenager that I had been. I was doing hockey, rounders, badminton, swimming, and athletics for the school. I was throwing discus and getting tennis coaching for the county. I was a qualified lifeguard and personal survival long-distance swimmer. How I found the energy, I don’t know.
Eating less started one October and I was wearing tracksuits all winter until the weather warmed up the following May. And then out came my spindly legs and I could no longer hide what I had been doing. I got a different kind of attention – I got concern from the teachers and some female members of staff ‘had a word with me’. I got unexpected attention from other girls – a kind of envy and questions about “how did you do it?” I hadn’t realised what they felt about their own weight.
Very quickly anorexia becomes ritualistic. You want the biggest bang for the buck – the most food for the fewest calories. Breakfast was green apples and black coffee. Lunch was more apples (I got through 8 most days) and a sandwich. Dinner was however little I could get away with. I started to cook my own tea – a boiled from frozen white fish portion – little more than 100 calories; home-made coleslaw with low calorie mayonnaise (50 calories) and a small choc ice (125 calories) to finish. I was aiming for a 1,000 calorie a day deficit, as the booklet advised. I had a bigger deficit than this most of the time.
I should have torn the calorie theory apart when I was 16, but I was too absorbed in the con to realise that it was a con. Instead of wondering why I didn’t lose 2lb every week (of fat alone – more in water and lean tissue on top), in which I maintained the 1,000-calorie deficit I thought I was the issue. So, when the weight loss stopped, I cut back further. I continued to eat less and tried to do more. Things could be removed from the ritual – one apple at breakfast not two. Sandwiches became dry bread. Dry bread became – throw the crusts to the birds in the playground. Then it became – who needs bread at lunch time? I developed the behaviours that people with anorexia know well. The lies that you don’t see as lies – they’re part of the condition. “I ate earlier.” “I’ve got dinner when I get home.” “I had something on the way home from school.” Anorexia is a dishonest condition – most of all you’re being dishonest with yourself.
The rituals are an important part of the condition, but control is the major part of the condition. Why does anorexia often happen in middle class high achieving girls? Because such children tend to have parents with high expectations and low tolerance levels for failure. Such parents (with no intended judgement here) tend to be quite controlling and anorexia is in big part the taking back of some control. The most fundamental thing that we can control is what goes into our bodies and that’s what anorexia is fundamentally about.
The incidence and severity of anorexia
“AN [anorexia nervosa] is a psychiatric disorder with a substantial comorbidity, chronic course, and the highest mortality among all psychiatric conditions” (Ref 6).
The lifetime prevalence of anorexia in females ranges from 1.2 to 2.2% (Ref 7).The prevalence in males is 10-times lower. The onset of anorexia most commonly occurs during adolescence, with 15–19-year-olds constituting 40% of newly diagnosed cases. Peak incidence is between 14 and 18 years of age. Approximately 85% of cases begin before the age of 20, and nearly all of them before the age of 25. (Ref 7 again – if you are interested in this topic and want to read one reference fully, I highly recommend this one.)
Mortality data vary greatly. Outcomes are worse in cases that resulted in hospitalisation and in adults with anorexia. If a teenager can access effective treatment as early as possible, chances of recovery are good. Reported crude death rates (the proportion of deaths in a given population) range from 0 to 22.5%, while the standardized mortality ratio (SMR), which quantifies the increase in mortality in a study population of the same age, ranges from 0 to 17.8. That’s up to one in five people at risk of substantially premature death from the condition. A review of 119 studies, involving 5,590 patients estimated that approximately 5% die from the condition, 47% recover, 33% show some improvement and 15% remain chronic long term, but avoid death (Ref 8).
Anorexia is associated with a high comorbidity. The condition is commonly associated with other psychiatric disorders (depression, anxiety, and compulsive behaviour, for example). The condition is also commonly associated with physical ailments – nutritional deficiency, anemia, osteoporosis, muscle wasting, damage to internal organs, sleep deprivation and more. Other disorders are also likely to develop in a person with anorexia – other eating disorders and/or drink/drug abuse are common.
The conundrum of anorexia
The conundrum of anorexia is that recovery is the diametric opposite of what the person with anorexia wants to happen. If you have a cold, you want to recover from the cold. You feel better when it’s gone, and you don’t want another cold. There are various definitions of recovery from anorexia (Ref 9), but, if we use the DSM definition, the person needs to no longer meet the A, B, C criteria to be no longer defined as anorexic. This means that the person should no longer be restricting energy intake, no longer substantially underweight, no longer intensely fearful of gaining weight and no longer disturbed by their own body weight or shape. This is a huge ask for anyone with anorexia.
Not every person with anorexia wants to recover. Studies demonstrate that only approximately 50% of anorexia cases are diagnosed (Ref 10) and only 1 in 3 of those diagnosed receive specialist care (Ref 11). Out of those who begin treatment, 20–51% of inpatients and 23–73% of outpatients avoid or drop out from their treatment program (Ref 12). A number of sufferers get to the point that they realise they need help and they want to be free from the obsession that dominates their life, but they don’t want to gain weight. They want some energy and sleep back, but they don’t want the weight gain. When I met Nikki, she quantified that she needed to gain a stone (14lb/6kg), but I know that the thought of that actually happening would have been utterly terrifying to her.
Even if a degree of recovery occurs, relapse is high. A systematic review, conducted up to April 2018, found 16 studies relevant to the examination of relapse. The analysis found that 31% of patients relapsed after treatment. The highest risk of relapse was during the first year after discharge and the risk continued for up to two years (Ref 13).
The additional conundrum of anorexia is that it’s a condition that comes to define the person. Anorexia becomes what you do and who you are. From the minute you wake up to the minute you try to sleep, food, rituals and weight are omnipresent. To overcome anorexia requires overcoming who you are and what you do. How do you wake up and not think of food? How do you wake up and not weigh yourself? How do you eat a different breakfast and in a different way and not be utterly panicked at what you’ve just done? How do you stop counting calories? How do you cope with the inevitable weight gain that comes with recovery? What do you do all day when you don’t ‘do anorexia’?
Overcoming anorexia
I am in awe of any medical practitioner who even tries to work with people with anorexia. I have had a number of requests to help people and I have declined all of them. I met with Nikki as a peer (both having shared our experiences in a book at the time) and I could relate to Nikki’s relationship with anorexia but in a strangely detached way. It was so long since I had lived as she was continuing to do, that I just had this enormous sense of relief that I had escaped this most insidious condition so many years earlier and I felt desperately sorry for this adorable, warm, and friendly person who was completely in the grip of it.
One of the most common outcomes from anorexia is bulimia – the starvation can no longer be tolerated, and the person finds them self-overeating. Strober et al demonstrated that approximately 30% of patients with anorexia exhibit binge-eating episodes (with an onset after an average of 24 months of follow-up) (Ref 14).
It was this experience in me that led to research into food cravings and subsequently the book “Why do we overeat? When all we want is to be slim.” I was fortunate in many ways that, within a year of trying to eat less, I developed periods of overeating, as this was my way out of anorexia. I started to gain weight inevitably and I lost control over my food intake. This loss of control was the effective end of anorexia, as anorexia is about control. My world changed in a noticeably short space of time from deprivation, control and feeling virtuous from abstinence to overconsumption, loss of control and the disgust that accompanies that. However, though I didn’t know it at the time, this was my way out of a condition that could have killed me. My focus thus changed from trying to preserve my routine of anorexia to trying to get back any kind of control over my eating. The change in focus was the end of my relationship with anorexia.
I thus agree with the findings under the subheading “The incidence and severity of anorexia” above. In my experience and that of others, prognosis is best the younger and sooner the condition can be resolved. I didn’t get treatment, but there was another way out – a common way out – that helped me at the time. Much as I loathed the overeating that replaced the undereating, it was a way out of an otherwise absorbing illness. It actually replaced one preoccupation with another, but a less deadly one. This brings us to…
Final thoughts
They say if a child is about to run out into the road, you must scream “Stop!” as opposed to “Don’t run” – because one is a clear command and the other includes the word “run” – which the child might hear and do. Similarly, with behaviour change, trying to not do something makes you think of that something. The most powerful tool I have found in behavioural change is to “crowd things out.” Just like “stop” crowds out “run”, so doing X can crowd out Y. Overeating crowded out undereating for me, as it does for many others. Sure, yes, I then had to resolve overeating, but that’s less life threatening – especially in the early stages before obesity might occur.
The crowding out concept is all about putting something else in the place of what you’re trying to stop. My final way out of overeating was to research the habit to understand why I was doing what I was doing. This became so absorbing that it’s what I do now as my vocation. If you’re busy researching, you have less time to overeat. If you’re enjoying researching, you have reduced need to seek out pleasure from food. Another important ‘crowd out’ was to replace a desire to lose weight with a desire to be healthy and thus to eat healthily. Losing weight tends to follow but making the primary focus health crowds out the bad things that we do when we prioritise losing weight.
Ideally a bad habit should be crowded out with a good habit. A number of people replace one obsession with another. One of the most common crowd outs with anorexia is to replace the emphasis on ‘eat less’ to ‘do more.’ Exercise can then be overdone, used as a sense of feeling in control and used to fill the time that was occupied with food abstinence and rituals. This might be a lesser of two evils, but it would still be better to try to replace something about control with something different, rather than a different way to exercise control.
Discovering what you enjoy doing and doing more of that is the best way to crowd out something that is taking over your life. I caught an eating disorders specialist, Hope Virgo, speaking on BBC Breakfast about Nikki’s tragic situation and the following day, one of Nikki’s best friends, Gemma Oaten, was on the same show discussing her own anorexia and Nikki’s. Both Hope and Gemma shared that Lockdown had been particularly tough on Nikki. She had not been able to go to the gym, which was a big part of her routine. Exercise also ‘allows’ the person with anorexia to eat more and we never burn off as much as we think we do, so the overall balance of intake is healthier.
Nikki lost even more weight during lockdown. She will not have been alone. Psychiatrists have warned of a “tsunami” of eating disorder patients amid data showing soaring numbers of people experiencing anorexia and bulimia in England during the pandemic (Ref 15). As people have felt completely out of control with unprecedented restrictions of movement and social contact, many will have tried to get a sense of control back by controlling something else. As I said above, the most fundamental thing that we can control is what goes into our bodies and that’s what so many people will have tried to do over the past year.
Nikki loved Big Brother. She was at her happiest and healthiest when she was in a Big Brother house – and she participated in more than one series. This may well have been her ‘crowd out’ – her way of being so busy and otherwise engaged that she could forget about food for a while. Nikki would also not have been able to indulge her usual rituals in the house, as the routine was set in there by the show producers. Many people with an eating disorder would be terrified of being on Big Brother, as it would feel like the ultimate loss of control. But for Nikki it worked. And that’s the important thing. Every one of us who spends longer thinking and worrying about food and weight than we would like, needs to crowd it out with something else. For most of us it won’t be Reality TV, but there will be something that works for each of us. If this note resonates with you personally, I sincerely hope that you find your crowd out tool and soon.
Until the next time
All the best – Zoë
References
Ref 1: https://www.bbc.co.uk/news/entertainment-arts-56705671
Ref 2: https://www.thesun.co.uk/tv/14609202/nikki-grahame-anorexia-battle-big-brother-eating-disorder-12/
Ref 3: American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders (DSM–5). Fifth edition. 2013. https://www.psychiatry.org/psychiatrists/practice/dsm/feedback-and-questions/frequently-asked-questions
Ref 4: Table 19. DSM-IV to DSM-5 Anorexia Nervosa Comparison. https://www.ncbi.nlm.nih.gov/books/NBK519712/table/ch3.t15/
Ref 5: Severity is based on body mass index (BMI) derived from World Health Organization categories for thinness in adults; corresponding percentiles should be used for children and adolescents: Mild: BMI greater than or equal to 17 kg/m2, Moderate: BMI 16–16.99 kg/m2, Severe: BMI 15–15.99 kg/m2, Extreme: BMI less than 15 kg/m2.
Ref 6: Klump el al. Academy for eating disorders position paper: eating disorders are serious mental illnesses. Int. J. Eat. Disorder. 2009. https://pubmed.ncbi.nlm.nih.gov/28581532/
Ref 7: Gabriela Jagielska and Iwona Kacperska. Outcome, comorbidity and prognosis in anorexia nervosa. Psychiatr. Pol. 2017.http://psychiatriapolska.pl/uploads/images/PP_2_2017/ ENGver205Jagielska_PsychiatrPol2017v51i2.pdf
Ref 8: Steinhausen. The outcome of anorexia nervosa in the 20th century. Review Am J Psychiatry. 2002. https://pubmed.ncbi.nlm.nih.gov/12153817/
Ref 9: Jennifer Couturier and James Lock. What is recovery in adolescent anorexia nervosa? Int J Eat Disord. 2006. https://pubmed.ncbi.nlm.nih.gov/16791851/
Ref 10: Keski-Rakhonen et al. Epidemiology and course of anorexia nervosa in the community. Am. J. Psychiat. 2007.
Ref 11: Hoek and Hoeken. Review of the prevalence and incidence of eating disorders. Int. J. at. Disorder. 2003
Ref 12: Abbate-Daga et al. Resistance to treatment and change in anorexia nervosa: a clinical overview. BMC Psychiatry 2013.
Ref 13: Berends et al. Relapse in anorexia nervosa: a systematic review and meta-analysis. Curr Opin Psychiatry. 2018. https://pubmed.ncbi.nlm.nih.gov/30113325/
Ref 14: Strober et al. The long-term course of severe anorexia nervosa in adolescents; Survival analysis of recovery, relapse, and outcome predictors over 10–15 years in a prospective study. Int. J. Eat. Disorder 1997. https://pubmed.ncbi.nlm.nih.gov/9356884/
Ref 15: https://www.theguardian.com/society/2021/feb/11/doctors-warn-of-tsunami-of-pandemic-eating-disorders
