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Some people might think a mental illness gets diagnosed and then remains one condition for a person’s life. However mental illnesses can shift and change throughout life. This is just one reason why language around mental health is so important, for example calling someone ‘an anorexic’ is unhelpful as it not only does it sees the condition before the person, but it defines the person by one condition. But a person diagnosed with anorexia might develop binge eating disorder, or other types of eating disorders, as this personal story backed by research can attest.
This Eating Disorder Awareness Week we consider whether eating disorders can change throughout a person’s life. Juliette Burton explains how her eating disorders have morphed into different manifestations throughout her life.
My body has shifted shape a lot in my lifetime, as has my experience within it.
Many people might think one eating disorder fits one person for their whole life. Just like clothing doesn’t fit forever, neither does a mental health diagnosis. Life hasn’t gotten better in my ongoing journey of recovery from eating disorders. But it’s certainly got ‘different’.
Early Years: High Responsiveness To Food
My first issues with food went unnoticed. Around the age of 7, I began to have my first challenges with food. I remember being obsessed by birthday cake, the promises of one perfect, safe day of happiness and friendships.
A couple of years later I was being bullied by kids at school and others for being overweight, I was fixated on chocolate at Easter or Christmas and told to put it ‘out of sight out of mind’. But this stark remark didn’t make sense to me. My mind latched onto things both seen and unseen with a hunger my body couldn’t handle. And research is catching up to my experience and that of a great many others.
According to a new study led by researchers at UCL and Erasmus University Rotterdam and supported by MQ Mental Health Research, Rosetrees Trust and the Netherlands Organisation for Health Research and Development, having an avid appetite in early childhood (i.e. an enthusiastic response to food) may be linked to a higher likelihood of experiencing eating disorder symptoms in adolescence.
The study, published in The Lancet Child & Adolescent Health, considered data from 3,670 young people in the UK and the Netherlands to investigate how appetite traits in early childhood could relate to the development of eating disorder symptoms up to 10 years later.
Researchers found a higher food responsiveness, e.g. the urge to eat when you see, smell or taste palatable food, at the ages of four and five was linked to a higher likelihood of reporting a range of eating disorder symptoms at ages 12 to 14.
The team also found that a slower pace of eating and feeling full more quickly in early childhood may be a sign you will not develop eating disorder symptoms later in life.
“Although our study cannot prove causality, our findings suggest food cue responsiveness may be one predisposing risk factor for the onset of eating disorder symptoms in adolescence. However, high responsiveness to food is also a normal and very common behaviour and should be seen as just one potential risk factor among many rather than something to cause parents’ worry.” Co-lead author Dr Ivonne Derks (UCL Institute of Epidemiology & Health Care)
Looking back, it’s clear I was a very responsive child, as well as being particularly sensitive to sights, sounds and smells, I was highly affected by food cues too. Perhaps I was more easily overwhelmed than other people. I now wonder whether this was due to undiagnosed ADHD, but since research into mental illness and neurodiversity has historically been so skewed towards data collection from men and male children, the diagnostic criteria did not appear to apply to me hence waiting until later in life to even be considered for ADHD diagnosis. Without research it truly is guesswork, and the guesswork of my life led me to develop a string of mental health diagnoses.
Food at this time, and at other times in my life, numbed me from any possibly mental or sensory overwhelm and helped me operate at a level at which other people seemed to be more tolerant.
According to the study from UCL and Erasmus University Rotterdam, higher food responsiveness is linked to an increase in the odds of reporting a range of eating disorder symptoms. In particular, food responsiveness was linked with a 47% increase in binge eating symptoms. Adolescents whose parents rated them highest on food responsiveness were almost 3 x more likely to report binge eating symptoms compared to adolescents whose parents scored them lowest (on a scale of 1-5).
“We know from research that individual differences in food responsiveness have a strong genetic basis. The genes involved influence our gut hormones and reward processes in the brain. This means that, because of biology, some of us have stronger responses to food and a greater compulsion to eat when palatable foods are available, while other people are uninterested in food. This is why some people find it difficult to maintain a healthy weight in the current environment – food is constantly on show, and we are being prompted to eat all the time by advertising, and other aspects of the modern environment. The modern food environment may make some children more vulnerable to developing eating disorders, for this same reason.” Co-senior author Dr Clare Llewellyn, UCL Institute of Epidemiology & Health Care
For me, between the ages of 8 and 11, thanks to rapid weight gain, I would be weighed and measured at hospital every school holiday. Adults repeatedly told me to lose weight. The idea of good foods and bad foods crept in, well before puberty. Due to hypermobility physical education at school was painful, and no alternatives were offered to work with a body with difference, so exercise felt neither comfortable nor safe.
A different body and different mind led to isolation. Symptoms of depression and anxiety disorder began to come to the forefront and looking back I can recognise symptoms of obsessive-compulsive disorder with ritualistic behaviour and delusional thinking.
Early Teenage Years: Anorexia
After losing some weight aged 11 before changing schools, aged 14 this power within me, this unusual attachment to food, shifted shape again. I was diagnosed with my first mental health condition, anorexia.
According to the aforementioned study, a 16% increase in odds was found for restrained eating, whereby a person restricts their intake of food to lose weight or avoid weight gain.
Anorexia in my life seemed to be a solution to some painful experiences emotionally. Restricting my intake gradually became my way of having a voice, exercising autonomy, agency over my own life. I didn’t feel heard, so this resistance and rebellion was my own, no one else’s. It took hold strongly and quickly. The chemical changes that happen in starvation mode are incessant and pervasive. The anorexia voice whispered in my ear daily, and it was my one friend, or so it felt. I turned towards it as an answer to any and every difficult experience. It always had the answers.
I couldn’t see or didn’t want to see the effect anorexia had on my life, those around me. It wasn’t a label I consciously chose; it was a series of daily behaviours and thoughts that helped me cope. The only thing that mattered was to turn to the anorexia. It became my steadfast companion, soothing me, powering me, and if it threatened my life at the time I didn’t really mind.
My first hospitalisation was aged 15, during my GCSE year. As a result this straight A student fell out of education.
A light in my eyes had gone out. I can see it now looking back at photos of myself at that age. A sparkle was extinguished. I didn’t feel hope for the future, I didn’t feel my worth. I felt too much and needed to feel nothing. So I numbed myself by restricting my food, focusing only on losing weight to give my mind a focus and direction.
Aged 17 I was sectioned under the mental health act for being a month away from dying of anorexia. I didn’t remember minding the threat to my life. I wasn’t that keen on living anyway.
The stress of being sectioned led to me hallucinating in the hospital, perhaps another shift of shape for this powerful force within me. And so, while being treated for anorexia I was on anti-psychotic medication. Once the hallucinations stopped, I carried on in my treatment for eating disorders, without much conversation or time given to the ridiculous existential crisis those hallucinations had on me.
Late Teens: Binge Eating Disorder
A year after being sectioned for anorexia I suddenly overnight went into binge eating behaviour. That control I’d exerted so rigidly with my anorexia shattered and I binged day and night, I was powerless over my ability to stop eating. Aged 19, I would pass out from the pain of eating uncontrollably.
The attitudes of people around me isolated me even more as understandable as they might be. For years I’d not eaten enough and was obsessed with weight loss, suddenly I could not stop eating. No wonder people thought it was about self-will or will power. But I can absolutely tell you it was nothing to do with this.
“People – including children – living at a higher weight commonly feel stigmatised by society, and sometimes by their friends and family too. Stigma doesn’t always take the form of overt and abusive comments. It often takes the form of well-intentioned advice about weight or eating, in the hope that this will encourage someone to eat less, improve their diet quality, or lose weight. But we know that these sorts of comments can be very harmful, especially to children, and can cause disordered eating, more weight gain, and sometimes very high levels of distress and isolation. Stigma is an experience that people living with obesity, binge-eating disorder or other eating disorders, share in common. We need to do a lot more to help people understand that neither obesity nor eating disorders are a choice. They both result from a strong genetic vulnerability that is triggered by living in the modern food environment.” Co-senior author Dr Clare Llewellyn, UCL Institute of Epidemiology & Health Care
Anorexia and binge eating disorder for me were both were flip sides of the same coin. Both numbed my overwhelming thoughts and feelings I could not cope with. Both kept me alive, one held more autonomy and the other held more powerlessness. Neither were to do with will power or weakness. Both were my mind and body coming up with incredible inventive ways to survive.
“While the role of appetite in the development of obesity has been studied for many decades, {our study} is the first study to comprehensively examine the role of appetite traits in the development of eating disorder symptoms.” Co-senior author Dr Clare Llewellyn, UCL Institute of Epidemiology & Health Care
My binge eating disorder was not taken seriously by medical professionals, nor those around me. I wanted to end the pain. I was suicidal, longing for death every day. After taking action to cause the end, I was hospitalised again this time in a 12-step clinic. I learned about addiction and how food can be an addiction much like alcoholism.
Adulthood: Bulimia
It wasn’t a quick fix; it took a couple of years before I found some abstinence from my binge eating or starvation addiction. I had about 4 years of this stability before bulimia found me. After being fired out of the blue my relationship with food once again shifted. I began to binge daily and purge afterwards. Having said in my teens that bulimia didn’t “fit” me, it became the eating disorder that persisted the most, partly I feel because it is so easily hidden. Everyone seemed to care about my anorexia as my weight loss seemed to upset so many people. The general attitude towards my binge eating disorder was it was my fault. The lack of empathy or compassion led me, like with many of my mental health conditions or challenges, to feel more isolated, more hopeless, and more like there was nowhere to turn.
“Eating disorders can be harder to treat effectively once they develop and so it would be better to prevent them from occurring in the first place. Our work in identifying risk factors in early life aims to support the development of possible prevention strategies. These could, for instance, involve providing extra support to children at higher risk.” Co-senior author Dr Clare Llewellyn, UCL Institute of Epidemiology & Health Care
Isolation is the killer, not my mental health conditions. The stigma I felt led me to turn to my illnesses as solutions again and again. And whether the suicidal ideation gave a more immediate end to the pain of separation from others I felt or whether I committed myself to my illnesses more because it felt as though there was nowhere else to turn therefore, I’ve put myself at greater risk of developing other health conditions as a result, either way, mental health conditions are life-threatening.
Nowadays I have a lot of internal pains, which might be in my digestive system. Yet they are unexplained. But they do get in the way of my day-to-day life. So, although I now have a wonderful life, full of friends, a great job, exciting adventures, my eating disorders may have set life-limiting ticking timebombs internally. It frightens me to have worked through such shadows, to step into the light and for the consequences of my behaviour when living in darkness to draw me back in.
My eating disorders are indeed shapeshifters. Much like my body has changed shape dramatically as a symptom of my eating disorders, and with bulimia my internal organs have experienced intense pressure and are now dealing with the worrying effects of this, my eating disorders didn’t just manifest as one condition that stayed the same. With my life changing, my behaviour changing, so too did my coping mechanisms.
Hope For The Future: Prevention For Others
So what can be done to prevent children going down the same route as I did with their relationship with food? Researchers on the study mentioned earlier suggest a healthy food environment and responsive parental feeding strategies may help to lower the risk of developing eating disorders.
“A healthy food environment is an environment in which healthy foods are available and more prominent, salient, and affordable than less healthy options. Responsive feeding is about providing nutritious food at set mealtimes and snack times, and then allowing the child to decide what to eat and how much to eat (if anything at all) without pressuring them.” Co-lead author Dr Zeynep Nas (UCL Institute of Epidemiology & Health Care
Food is such a primal relationship we have. It gives us life; without food we would die. Arguably that relationship is more vital than the relationship we have with our caregivers as children.
Eating disorders are not attention seeking. They are life-threatening. They are not about vanity. They are about surviving. They are not made up. They are more real to me than most other constructs in day-to-day life.
There is always hope though. I wish I’d received help at a far earlier age than I did. Perhaps my eating disorders wouldn’t have dominated my life so unavoidably if intervention had occurred earlier. It’s impossible to tell. However, I can strongly say:
If you, like me, feel your relationship with food isn’t the same as other people, you’re not alone. And you’re not at fault for this. You make sense. Your thoughts and feelings and behaviours make sense. Research is catching up to help us make it clear to other people that we make sense. It’s only thanks to research that you, and I, will get the help we need and have deserved for so long, too long. So, keep going, keep shifting shape. With proper funding, research will fill the gaps that have been left empty for too long in our stories.
The biggest change that is possible is recovery.
If you’d like to know more about eating disorders and the myths that surround them, you can read more here.
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