This article is about teenagers who suffer from anorexia nervosa. Bulimia nervosa, a different condition, usually starts later, at around 20 to 30 years of age and will not be further mentioned. In anorexia nervosa, not only is there restriction of food, but also intense feelings and thoughts (often of shame and pride) about body image, friendships and achievements. There may also be behavioural changes, such as avoidance of certain foods, excessive exercise, or obsessively sticking to routines.
Anorexia nervosa is characterised by a persistent desire to be thinner, and to continue to lose weight despite clear evidence that this is causing harm to the body, and to relationships to oneself and to others in a caring role. Certain foods are avoided; these foods are often judged to be bad foods (fats, carbohydrates, sugary foods). There are effects on the body, including weakness, and poor function of major organs such as bones, blood, heart, kidneys and liver. Physical weakness makes school attendance difficult, particularly climbing stairs and doing sports. Most importantly brain functions are damaged and often this is underestimated by the sufferer and carers. The brain is lighter, (30% reduction), and thinking is rigid and obsessive. Hunger is no longer recognised, and there are changes in sleep and emotional regulation. Often when food restricting, the sufferer feels calm, in control, and successful. Sufferers often don’t feel that they are suffering, and can have a sense of pride in their strict dieting and exercising behaviours. Poor brain function often leads to other symptoms of anxiety, depression, and sometimes an almost psychotic state, with the suffering hearing a voice telling them to stick to dieting and not listen to others. Concentration is impaired, and social contact diminishes.
What is different about anorexia nervosa?
Anorexia nervosa is not just dieting. About 1 in 5 teenagers try and diet and some make themselves sick. However anorexia nervosa occurs in only about 1 in 200 young women and 1 in 2000 young men. It is unclear whether there are more people with anorexia nervosa today; however it does seem that there is an increase in people dieting, bingeing and then trying to be sick. This may be related to social media and advertising. For instance in Fiji, before television and western adverts were introduced, there was very little excessive dieting or vomiting in adults. Soon after television arrived the number of women dieting, and being unhappy with their body image increased, and the diagnosis of bulimia nervosa became common.
Anorexia nervosa is an illness of young women starting at about an age of 15. Anorexia is also seen more rarely in young men. Anorexia nervosa is more commonly seen in young people who are dancers, models, and take part in endurance sports, and in sports where there are weight limits or weight categories e.g. horseracing and wrestling.
What makes anorexia nervosa worse?
Once anorexia nervosa starts, if usually becomes self-sustaining. It gets progressively worse over time, and the sufferer loses control over eating and body image, and becomes controlled by the illness. When this happens, common situations which make the illness worse are:-
What makes anorexia nervosa better?
Who gets anorexia nervosa?
Anorexia is usually seen in people with a somewhat obsessive and perfectionist personality. Often there are family members with similar personality characteristics and a history of eating disorders. Emotional expression is often reduced, even before the illness takes hold. Sometimes the sufferer is above average ability, and often has high drive to succeed and be the best at a sport, or an activity. There is a connection with other brain disorders (often called neuro-disability). These include autism, and alexithymia (difficulties recognising and describing different emotional experiences). Anorexia typically starts at age 15, and about half of sufferers keep it secret until their early 20s. There are often high shame levels when having eaten, and pride about dietary control and successful weight loss. This often means that motivation to recover from anorexia nervosa is low in the early stages.
How many children and young people get anorexia nervosa?
Anorexia nervosa is quite rare; about 1 in 200 women suffer from it, and far fewer young men.
How does anorexia nervosa get diagnosed?
There is no blood test or brain scan to diagnose anorexia nervosa, the diagnosis is made on history, physical findings of starvation, and information from carers, friends and teachers. Often there is a delay in seeking or getting help, due to the sufferer feeling, and stating that there is nothing wrong. There can be concealment of weight loss through careful attention to clothing, appearance and secretive eating behaviours.
The SCOFF test is a simple screener of five questions that can be used by non-specialist health practitioners, or other carers such as teachers.
If the answer is “yes” to two or more, then it may be worth proceeding to use other assessment questionnaires and/or discussing with a specialist health professional or a specialist agency.
The diagnosis should be made by a team of professionals including a paediatrician, psychiatrist, dietician, and other professionals such as clinical psychologist, family therapist, or nurse specialist. Information is gathered from the whole family seen together, and then from family members seen separately. Paediatric examination is important, and blood tests, weight, height and heart investigations are done. These include a heart trace (ECG), blood pressure measurement, temperature, pulse. Blood tests are needed to look for effects of starvation. Questions are asked about physical strength, rate of weight loss, periods, sleep and exercise, as well as personality, particularly obsessions and perfectionism, dislike of body image and social difficulties. The team should complete a full assessment for other conditions such as autism, depression and various anxiety disorders. The family are asked about similar characteristics and any eating disorders in parents or the extended family. History of interests are taken, as often other family members may excel in certain areas that require a high level of drive, attention to detail, and competitive desire. Questions are also asked about use of social media and how this might help, or hinder the sufferer’s development. Often there is high levels of distress, and features of shame, though this may be hidden or suppressed on the first visit to the specialist team. The team also will assess the strengths of the sufferer and carers, and their values, goals and motivation to change.
What else could it be?
In anorexia nervosa, weight loss is desired, and this is not usually seen in other illness causing weight loss. Physical illness needing consideration include diabetes, coeliac disease (gluten food intolerance), and bowel problems such as inflammation of the intestines, endocrine problems, and cancers. Occasionally tropical infections can also cause significant weight loss.
There are some psychiatric conditions that can cause weight loss, such as psychoses (hearing voices and having very unusual beliefs), severe obsessive compulsive disorder, and severe depression. Anorexia nervosa can also affect mood, so sometimes the sufferer becomes depressed, or anxious, or sleep deprived.
Here is a summary list of possible conditions causing weight loss.
Why did my child get anorexia nervosa?
Anorexia nervosa is now thought of as a brain disorder (neurological). It is not anyone’s fault, though often people judge it to be so. This is often what social media, friends and family will hint at, and the sufferer often blames themselves during the process of recovery. Self-blame or blame by others can delay or hinder recovery. The exact cause of anorexia nervosa is not known. However there are various theories which include:
Anorexia nervosa can be inherited, it does tend to run in families, and the personality of the sufferer is inherited to a degree.
There is increasing knowledge of brain chemical involvement, both in the cause of anorexia nervosa, and in its maintenance once it has a hold on the sufferer. Brain circuits are involved, and there are brain imaging studies and other chemical studies trying to find the cause. However many of the brain findings are because of starvation, and some do correct themselves once weight has been restored.
Social media is seen as a trigger for some sufferers. It can be involved in maintaining the illness, particularly if the sufferer becomes obsessed by social media messages about thinness. The social environment may also trigger and maintain the illness, such as being in competitive environment, where there is strong desire for success, and where weight loss is encouraged.
Puberty is often considered a trigger, as there is a drive to become a young adult and form an identity of one’s own. Investment in body image change as a solution to the anxiety evoked by these developmental challenges is sometimes a contribution to the development of anorexia nervosa.
Sufferers of anorexia nervosa often have other problems as mentioned earlier. Sometimes these are present before the start of the illness, and sometimes they happen because of the illness. This makes assessment difficult sometimes, and developing a timeline of events, problems and key stresses can help map out the connections.
A timeline helps with understanding the rich diversity of human experience, and the unique pathway of each sufferer and their carers/parents. Also it is necessary to “check-up” on other common problems that go with anorexia nervosa.
What are the high risk symptoms?
Some symptoms worry professionals (high risk). The sufferer should get help quickly, as serious problems such as collapse may occur.
There are guidelines, called Junior MARSIPAN (Management of really sick people with anorexia nervosa), that contain detail and guidance about high risk symptoms. The more common are low heart rate, low blood pressure, severe dizziness and drop in blood pressure when standing. Rapid weight loss of more than a kilo a week with very poor fluid intake needs assessment. If the sufferer has numerous high risk symptoms they may need admission to a paediatric hospital ward.
What treatments are there?
Treatment needs to be considered for everyone, not just the sufferer. Often carers are exhausted, stressed, and concerned about the sufferer’s welfare in all areas of life.
Anorexia nervosa is an illness that is hard to treat. Early treatment by a specialist eating disorder team is now recommended. The longer the illness is left untreated, the more it gets hold of the sufferer, and the effects on carers/parents is more significant. Unfortunately the sufferer may deny being ill, and this may cause a delay in seeking help.
Some suffers need admission to a medical ward if they have high risk signs such as unstable blood pressure, blood irregularities, dehydration or liver or kidney failure. Following admission for medical stabilisation, some suffers require admission for a longer period of time to a psychiatric in-patient unit specialising in eating disorders.
The most effective type of therapy for teenagers seems to be Family Based Therapy (FBT), the Maudsley model. However where there is a lot of conflict within the family, and sometimes when the sufferer is older, then individual cognitive behavioural work focused on eating disorders can help.
All psychological treatments can have side effects, such as increased anxiety, family conflict, family exhaustion and development of depression in family members. Looking after everyone involved is important and necessary during recovery.
As recovery occurs, therapy usually needs to focus on body image difficulties. Ongoing body dislike is a risk factor for further episodes of anorexia nervosa. Body image work, and working with perfectionism can be challenging, as often a lot of energy is invested in image being connected with looks, or and feeling proud, safe, successful, and socially secure and praised. Getting the sufferer to disentangle themselves from this intense investment in weight loss, or low weight maintenance as a solution to their anxiety and confidence is not easy. First, weight has to be increasing or at a level that allows good brain function to happen. The sufferer usually has to want to challenge the body image, and perfectionistic thinking and behaviours, and treatment will often last some months. There are many strategies used to try and construct a sense of self that invests in a range of strengths and successes rather than focusing solely on appearance as a measure of success, or a path to success.
Other psychological approaches are Cognitive Behavioural Therapy treatments for other conditions such as obsessive compulsive disorder, social anxiety, depression and panic attacks.
Family Based Therapy
This is divided into three stages, and usually done in a specialist out-patient clinic over a year. The first phase is re-feeding by the family using a firm, kind, compassionate and calm approach. Control of eating is the responsibility of the parents, and food is prepared by parents. Eating is non-negotiable, and the type of foods includes calorie dense and diverse types. There are 6 meals a day, 3 main meals and 3 snacks. Parents often need to take time off work, and the commitment and time devoted to food preparation and meal time management is high. Parents and other carers have to look after themselves, and often need support from their GP, workplace, and friends. Conflict around mealtimes is often high, driven by anxiety around eating for the sufferer, and around completion of meals, and sufficient calorie intake for the carer. The family are seen weekly by family therapists.
This feeding phase continues for 12 weeks usually, and there should be weight gain of about 0.5kg a week. It is not easy but about 8 out of 10 families succeed in this task, and as weight gain occurs, often some other symptoms such as weakness, irritability, poor sleep, and poor understanding of the illness lessen.
The second phase is focused on handing control of mealtimes and eating back to the sufferer, and also discussing adolescent developmental issues, and family narratives, concerns and function. There is also discussion of the wider network such as relationships with school, social media and friendships.
The third phase concerns preventing relapse or re-occurrence of the illness, and dealing with stressful events such as holidays, leaving home, social media, intense relationships, and other conditions such as depression and anxiety.
Often people struggle to understand that the illness is just that; a serious brain (neurological illness). It is not the fault of the family, or sufferer.
Education is far ranging including description of the symptoms, the associated conditions, and the consequence of long term starvation on growth and functioning such as bone density, fertility and psychological functioning. This can be a very discouraging and stressful time for carers, and a focus on strengths is important. Many sufferers have considerable talents and strengths and focusing on these can help with their motivation to recover. Motivational interviewing sometimes helps, though when the sufferer is very low in weight brain function is significantly affected, and motivation may be low.
Educating the school, teachers and peers is important too. Supervision of meal times, reducing exercise) is necessary, and the school may need similar information about the illness not being the fault of the sufferer or family, and that recovery can be a lengthy process. Developing hope and a focus on strengths, and necessary adjustments to education provision are tasks that can help with recovery. Transition to 6th form or University can increase the risk of re-occurrence and thus careful communication to new teachers is required.
Social media is often a trigger for the first episode of illness, and may maintain the illness. Some sufferers see social media as almost an addiction in itself. To manage this, some sufferers limit or decide on abstinence as a way of managing the effects of social media on them and their illness. This is a similar approach to treatment of other addictions such as alcohol or illegal drugs. Abstinence works for some, though others take a harm-reduction approach.
The idea is to dis-invest attention and time to things that trigger or maintain the anorexia nervosa. This can also include “live relationships”, such as being involved with other teenagers who have a pre-occupation with social media, or a high drive to appear fashionable, thin, and perfect. Being involved in activities where thinness is judged to be necessary can also be a problem, and there is guidance to sports groups and dance groups about managing anorexia nervosa.
Some carers and sufferers find support groups helpful, and there are group treatments available such as multi-family therapy groups that can be effective. However treatment should take into account the values and wishes of the family and sufferer, and social treatments are not always welcomed or necessary.
On the whole medications do not work for anorexia nervosa. Many medications have been tried and none have significantly improved eating or the anxiety of eating. Low dose olanzapine (a medication that reduces drive and restless behaviour) is sometimes used. If the sufferer has an additional problem such as depression, or obsessive compulsive disorder, or severe social anxiety, then a medication such as fluoxetine or sertraline may be used. These medications increase the level of serotonin in the brain and can improve mood and reduce anxiety.
Paediatric review is necessary to ensure recovery of periods and fertility, bone health and any other complications of starvation. At the start of recovery regular review is needed, and sometimes admission to a medical ward if weight is very low.
Vitamin supplements are usually given and dieticians will advise on calorie intake and the range of foods to eat. The aim is to re-establish normal eating (3 main meals and 3 snacks) and to eat a wide (diverse) range of foods including energy dense foods (which are often avoided because of fat and sugar content). There is some evidence that recovery is maintained if diverse and dense foods are eaten in a normal manner.
Does anorexia nervosa go away?
Anorexia nervosa does get better in about half of people who suffer from it. The earlier treatment starts, and the more the sufferer and carers can co-operate with each other and with the professional team the better the outcome. However the severity of the illness can prevent improvement, and unfortunately some sufferers struggle to improve.
About half of teenagers recover completely and about 3 out of 10 continue to have intermittent difficulties, often at times of change (transitions) such as holidays, attending university, close relationships and employment changes.
2 out of 10 continue to have a persistently severe illness, with low weight, infertility, and medical and psychiatric complications.
Despite these facts and figures, it is important to be positive and strength focused, as many families do recover and often contribute to the growing “expert patient” group of people who have recovered. There are groups, authors and professionals who have written or born witness to the effects the illness has had on them and their carers. The Maudsley parent group is one such group, and charities have people who have suffered from anorexia nervosa.
When do I need to seek help for my teenage daughter or son?
2 out of 10 teenagers diet and lose weight, but few go on to develop the full condition of anorexia nervosa. It is important to recognise the full picture as early as possible and seek treatment. If there is uncertainty it is best to discuss early before low weight and body image distortion become firmly established.
General Do’s and Don’ts
Do take weight loss seriously, it may be due to a serious bowel illness, cancer, or diabetes, or a food allergy. Do seek help from your GP as early as possible. Do ask for help from your local eating disorder team if you suspect the development of an eating disorder. Do try and supervise meal times, and after mealtimes if you think your teenager is making themselves sick. Do try and eat together and eat the same foods in order to monitor and check on healthy and normal eating patterns. Do ask and challenge if foods are avoided. Do ask and check on social media use. Do ask friends of your teenager if they have concerns. Do use the SCOFF questionnaire and other questionnaires if you think that would be helpful. Do ask about worries, and unhappiness. Do check on periods and ask questions about the amount and type of exercise. Do ask about sleep and energy levels. Do ask about upsetting events such as teasing, body shaming, and bullying or relationship difficulties.
Don’t avoid seeking help, or asking for advice from your GP, help-lines or eating disorder charities. Don’t be put off by people or your teenager saying it is normal to lose weight, or go on diets. Don’t try and appease your teenager by buying low calorie foods, or start altering the family diet to try and get your teenager to eat. Don’t avoid conflict over food; conflict will often lead to the sharing of concerns. Don’t avoid asking about problems, even if this causes conflict. Don’t leave the responsibility for seeking help to your teenager; it is your responsibility to seek help and to care for your loved one. Don’t be critical of yourself or your teenager, or others,remember you and everyone is doing your best. Don’t be afraid to question professionals or ask for a second opinion if recovery is a struggle. Don’t believe that the illness is because of a lack of willpower; remember it is a brain disorder. Don’t forget to look after yourself and others in the family.
Author: Leo Kroll
Editor: Mark Lovell
Review in May 2019