It can affect anyone.
Groundbreaking research shows many adults suffering from anorexia are struggling to get the help they need.
Kristina Lainson, a New Zealand researcher at the University of Melbourne, has interviewed about 50 people for a study she hopes will break down misconceptions about the eating disorder. She hopes to speak to more before results are published next year.
About two-thirds of those she has already spoken to are between 18 and 35.
She says many people falsely think anorexia only affects teenage girls and young women.
The reality, she says, is many adults are living long term with anorexia, but some are not seeking help, while others struggle to find treatment options.
We spoke to Kristina, who has also worked as an eating disorders counsellor in Auckland, about her research.
What are the implications of living with anorexia?
Life with anorexia can be really hard and hugely disruptive. It doesn't necessarily go away or get any easier as a young person becomes an adult. This is what the research is for.
There is limited academic literature for clinicians to draw on about what the particular challenges are for a person living with anorexia whilst transitioning into adulthood, or how anorexia is experienced whilst navigating adult life, particularly if the problem has gone on for a number of years.
It's also, importantly, asking about how people cope. These are really important things to know if we are to make a difference.
How difficult is it for some people to get help?
As a general observation, anorexia is frequently perceived as a problem of white, middle class teenage girls. Certainly, this demographic is affected, but less well known is that anorexia affects people of all ages, genders, ethnicities and social groups.
People who don't fit the generally recognised image or demographic of anorexia often have greater difficulty having their problems recognised and so may face delays in gaining referrals to services. Or they may find that services aren't tailored to their needs.
What limitations are there in terms of help?
The current “best practice” models of treatment are largely designed for teens at home with parents who can supervise their eating plan. This model has also been shown to be most effective in the first two years of the problem.
Anorexia impacts on physical, mental and social wellbeing - every domain of life.
But for people over 18, or who have lived with anorexia for several years, the statistics on recovery become pretty poor, which is where this research aims to create change. We need to know more from the insider perspective - from the person living with anorexia - and give voice to their experiences.
Is anorexia a big problem for young people beyond their teenage years?
Anorexia isn't terribly common, but does affect roughly 1 percent of the population at some point during their lifetime. Of those who receive a diagnosis during their lifetime (which is most frequently in mid-late teens), between a quarter and a half of people will experience it as a recurrent or chronic problem over many years.
This is particularly true if there is no early intervention. Anorexia impacts on physical, mental and social wellbeing - every domain of life. It can be massively disruptive with a very concerning mortality rate.
So whilst not common, it is very serious and right now, recovery can become increasingly elusive as the years pass. However, recovery is possible and negativity around the prospect of recovery is unhelpful, so we really need to be focusing on what can be done and how we can improve support.
Why do you think people are hesitant to seek help?
There are many reasons why a person may not access support services. Lack of local provision can be one, but also a sense that the available help hasn't been effective in the past or isn't suited to them.
By the time people are in their 20s they may have had several hospital admissions and still feel stuck. Nor is anorexia a problem that people necessarily want to 'get rid of' in a simplistic sense.
There may be no apparent trigger other than a period of eating less or exercising more.
People often report a complex 'love-hate' relationship with anorexia, in that alongside all the negative effects of living with such a demanding and intrusive problem, they may also consider it an important part of how they cope with life, or a part of their identity.
There's also the potential for a person experiencing a sense of stigma, as is often the case with any mental health concern. So the decision to access support is not always a straightforward one.
What are common triggers for anorexia?
When people tell their stories of how and when anorexia began, those stories can have any number of beginnings. For some there are preceding traumatic events - difficult life circumstances, instances of bullying or body-shaming - and people do report a very clear link between those events and anorexia.
For others, however, there may be no apparent trigger other than a period of eating less or exercising more. That might have been going on a diet to intentionally lose weight, or it might have been unintentional such as illness or exam nerves.
At the time, they expected it to be temporary and for things to go back to how they were before, but that just doesn't happen for them and they find themselves stuck and unable to change course.
You talk about adults carrying anorexia over from childhood, do many adults develop anorexia?
Yes, anorexia can make its first appearance in a person's life at any age or stage. Just less often than for younger people.
Does anorexia manifest itself in different ways for adults than youth?
Age is always a factor in how we experience events and respond to them. I'm not aware of a particular age-related pattern, but anorexia definitely shows up in people's lives in many different ways.
So it's not always accurate to assume that a person living with anorexia will behave in certain ways, or fit exactly with what we typically understand anorexia to be like. We do well do turn our attention to how someone is going, and whether matters of eating or exercise are problematic for them or create anxiety for them.
If anyone finds their thoughts are dominated by concerns about food, weight, exercise and so on such that it affects their health, their happiness and their engagement with life, then that's a good reason for them to ask for help.
Kristina’s survey can be found here.
You can find out more about eating disorders and seek help from the Eating Disorders Association of New Zealand here.