There’s more than one way to get an eating disorder. Eating disorders are another mental illness that, to my mind, are poorly defined or understood, often mis-characterised and stereotyped, and far more complex than most people realise.

The DSM has a truly bizarre way of classifying eating disorders, with single symptoms such as weight or menstruation sufficient to bounce you out of one category and into another – and back again should those symptoms change. I don’t find this useful at all. I prefer not to use the clinical terminology and the irrational clusters of symptoms. I prefer to talk about food and body issues. This is a big category, there are many different ways these issues are expressed, and many different reasons people find themselves struggling with these issues. Our classic perception is a young woman starving herself because she fears getting fat. This is real, it happens. But the field is so much broader than this too, and the complexity of people’s distress so much more than we, as a culture, really understand.

The categories I find most useful are simply descriptive of behaviour or compulsions. Some people are not eating enough. Some people are eating more than enough. Some people are purging what they eat. A lot of people are doing two or all three of these. So we have restricting, binging or overeating, and purging.

These issues are prevalent! They are under-resourced – in SA we have only 2 inpatient hospital beds to support people with eating disorders – for our entire state. In my work as an ED Peer Worker I have often discussed and supported people to travel interstate to Victoria or Queensland for inpatient treatment as the wait list here is so long. We recently also lost our free counselling service for people with eating disorders that was running through Women’s Health Statewide. And yet, Eating Disorder are significantly on the rise in our population, and they carry the highest mortality rate of any of the mental illnesses. The risk of suicide is high, and the physical complications of disordered eating can be severe.

But the community perceptions can be appalling. It is assumed that people who restrict food are the most ‘serious’ and have the ‘real’ problems, whereas some studies have found that the mortality rates are actually highest for those who have a mixed condition. These people may not appear particularly underweight or unwell and as a result may not be taken very seriously. When resources are scarce, these are not the people who find themselves prioritised for treatment. The common myth is that people with eating disorders are vain young women who need to wake up to themselves. The reality is that anyone can struggle with disordered eating. The shame around these issues mean that most people struggle in secret, they feel deeply distressed, they lie to those closest to them and find their relationships cracking, they are infuriated with their own ‘weakness’, they internalise all the cultural myths about being weak, selfish, self-involved, vain, and useless, and they find themselves struggling in quicksand and going down.

I haven’t come across one ‘classic’ presentation of a person with an eating disorder in my work. I’ve come across a whole range of reasons people find themselves struggling with these issues. Most of us at some time in our lives will find ourselves struggling to maintain a healthy relationship with food. For most of us, fortunately, this will be fleeting. We’ll struggle for awhile then settle back into good routines again. 

For some of us, we get stuck. We get stuck in different patterns and for different reasons. Some of us are deeply concerned about weight gain and desperate to be thin. Some of us have severe food issues but don’t own a set of scales or count calories. There are many different ways that an eating disorder can start, and many different reasons people can find themselves having struggles with food. Distress in areas like body image isn’t always in play, and it’s a terrible dis-service to people to not believe them – or have anything to offer them, if their food issues have a different cause. Here are some commons reasons people can have major issues with food:

• Body issues such as a desperate fear of gaining weight, pregnancy, menstruation, onset of puberty, and so on. These can be very complex and arise out of other struggles with life, relationships, and self.
• Obsessive compulsive issues, for example around issues with germs, or extreme religious fasting.
• Developmental or neurological challenges, for example only eating foods or a certain colour, or having nutritionally limiting requirements about texture or patterns of eating.
• Psychotic issues, eg refusing to eat for fear food has been poisoned, or contains microchips.
• Pica – the appetite for non-food substances such as dirt.
• Mania changing the appetite. Some people eat voraciously when manic and do not feel full. Others forget about eating entirely. Some people do a bit of both in a binge starve cycle.
• Depression changing the appetite – see mania.
• Anxiety issues. When someone is afraid, the body goes into ‘fight or flight mode’ and directs energy away from non essential areas like digestion. People with chronic anxiety may find they are not hungry, have dry mouth or heartburn, and feel sick or involuntarily purge if they make themselves eat.
• Dissociation issues. Chronic dissociation can blunt sensations such as hunger. People may not dislike the idea of food, they may simply be unable to feel hungry and forget to eat. It can also blunt the sensation of fullness so people may overeat or binge. For some people overeating or starving to the point of pain triggers dissociation in a way that is soothing.
• Multiplicity issues. Some parts may not ever eat, so if they are out for a long time the body starves. Some people have difficulty with many parts coming out over the day and all of them eating, or none of them eating. It can be difficult to coordinate things like food intake if there’s a lot of switching and a lack of communication or co consciousness.
• Self harm issues. Binging or starving to the point of pain is a way some people inflict pain on themselves. Denial of food or forcing unpleasant purging can be a method of punishment or self torture.
• Abuse issues. Some people disconnect from their bodies following abuse and find the idea of caring for it and feeding it appropriately very alien and difficult. Sometimes food is part of abusive behaviour or strict punishments, where it is withheld, or a child is forced to eat when they don’t want to, or forced to eat food they dislike, overly hot or unpleasant food, or non food items. This can lead to enduring patterns and problems with food.
• Addiction issues – for some people food issues are part of a broader pattern of addiction and difficulty with regulating impulses.
• Drug issues – many prescription and recreational drugs alter the appetite or metabolism.
• Social issues such as isolation, bullying, or domestic violence can disrupt healthy eating patterns and a good relationship with yourself and your body, or can lead to extreme weight management as a perceived solution eg. a preteen boy teased for being chubby may focus on starving and weight loss as a way of preventing bullying and gaining social acceptance.
• Grief often changes eating patterns for a while. Some people go on to struggle with food or their body in the longer term.
• Health problems – any number of physical conditions can affect your appetite, energy, metabolism, sleep patterns, and digestive health! Physical conditions can also link into other issues, so what started as vomiting due to Irritable Bowel Syndrome, may become purging as a way to manage chronic anxiety. Nausea, pain, digestive problems and appetite changes should always be investigated rather than assumed to be psychological.
• Psychosomatic distress, where food or digestive problems are part of a bigger picture of emotional distress, for example involuntary purging that settles down once other major emotional stress is reduced.
• Attachment issues. For example children who have experienced huge stress such as being moved into the foster care system may have an unusual relationship with food, stealing or hoarding it, refusing to eat when watched, keeping food that has gone bad, or binging when food is available.

These difficulties can also tangle together, so someone may be struggling with a combination of thyroid issues, a recent bereavement, and long term self harm issues, all of which is presenting as disordered eating. The most useful approaches for some of these concerns is quite different from others – there is no one size fits all cure. But having said that, my experience has been that the basics behind the Recovery Model and Trauma-Informed Care were a good fit for most everyone no matter where they were coming from. People were all different – some were in denial about their food intake and I spoke with deeply distressed family or friends instead. Others were very aware of how wrong things had gone for them and desperate to find a way out. Some people were at the start of their struggles, others had been fighting a war for years. People wanted to be heard, and to be treated with respect. Those who were not struggling with body issues were desperate for someone to believe them that weight was not their focus. People needed to hear that they were not weak, vain, or pathetic. They needed to hear that there was not one way out of an eating disorder, but that there is a way out!

I asked a question of almost everyone I was in contact with in my role as an Eating Disorder Peer Worker, which was – “Have you ever met anyone who has recovered from an eating disorder?” Almost everyone had not. To me, this is huge. People need to see that other people have recovered. We need to be able to meet them, read about them, learn from them. We need to see there are roads out, and not one road but many! We need to be given the freedom to try different roads, different approaches, techniques, and frameworks so we can find our own good fit. We need to talk to people who get it. We need a way out of shame and isolation.

We really do deserve better. We deserve easy to access, good quality supports that understand issues with food can be complex and arise for many different reasons. We deserve clear information about these reasons, access to peers in a safe and supportive way, and the opportunity to try different approaches. I’m frustrated and distressed that this is not the situation we are in, in large part I believe because the community perception, and therefore the perception of funding bodies, are two commonly believed myths – that eating disorders are just about vanity, and that people with eating disorders never get better anyway so there’s no point in funding services. Rubbish!

If you or someone you care about has an eating disorder, I’m sorry. You deserve a lot better. But, there is hope. All over the world, people are navigating their distress without amazing services. People who hear voices are escaping the clutches of hospitals and talking to each on the internet about how to cope instead. People with PTSD are running their own support groups. People with sensory issues as part of mild autism are discovering they’re not alone. You can seek therapy privately, read books, reach out to recovered/recovering peer workers, and fumble your way through to your own needs and solutions. You are not alone. You have nothing to be ashamed of. You are stronger than you realise. You deserve a good life. You can recover.