A topic that is being discussed a lot at the moment: anorexia nervosa. You sometimes hear about it, but what does this disease actually mean? The facts about this can be found all over the internet, but what is the patient actually going through? I explain the different stages that a patient goes through during her illness. A very valuable article for patients, but certainly also for those involved and outsiders. *this article was written in a side format. This is because more than 90% of patients are women. I certainly don’t deny that there are men too, but it is very difficult to write in a neuter form. I hope for your understanding for this.

Stage 1.

Anorexia is a very complex disease that manifests itself in the search for control over food and weight. There is also often an end goal. This can be a weight, but also having a happy life with many friends, a successful (school) career and feeling confident and beautiful, in short, a goal that should bring the perfect life.The patient has often lost control over a situation (in the past) and is now looking for it back. This can be about a traumatic experience such as the death of a loved one or the divorce of parents, but it can also arise from, for example, bullying, insecurity, lack of attention, new events or having to take responsibility, (failure) fears and depression. The feeling of satisfaction gained from losing weight and not eating gives the patient enormous self-confidence. This is also a reason why it is often not recognized in the initial stages. The patient feels powerful, can handle the whole world, after all, she is in control and will not let anyone stop her. To outsiders it seems as if the patient is feeling better, but in reality she is exhausting herself in her struggle for perfection. However, the lack of energy is ignored, because this is proof that ‘it works’, that the body is not getting enough food and therefore has to draw reserves from its body weight. This often feels like ‘pride’, the worse the body feels, the better the eating disorder.If help is sought at this stage, the chance of recovery is much greater.

Stage 2.

This is followed by the next stage in which the patient has already lost weight and closes herself off to the outside world, she lives in her obsession. Insufficient food comes in to allow the body to function optimally, the minimal energy that comes in goes to the primary functions. This can cause complaints such as fatigue, dizziness, cold or even hypothermia and therefore blue hands and feet, absence of menstruation (amenorrhea), hair loss, brittle nails, downy hairs and flaky, pale skin, dehydration, damaged tooth enamel and caries (due to possible vomiting), heart complaints, reduced blood pressure and heart rate, intestinal complaints, hypoglycaemia (low blood sugars) and muscle breakdown. Psychological functioning also deteriorates. The hormone balance becomes confused, the emotions become flatter, concentration decreases, the patient can become apathetic and the patient can become socially isolated. All this can make the patient very unhappy deep inside, but this should not be felt, because it hinders the end goal.All kinds of tricks are often used to keep the eating disorder hidden. Food is thrown away or hidden, the thinning can be concealed by loose clothing and in some cases the eaten food is regurgitated, so the environment does not see that the patient is consuming far too little food. What is also possible is that the patient wants to make the eating disorder visible due to lack of attention or because the patient wants to show how good she is at losing weight. Food is often visibly thrown away, the problem is discussed openly, food can be refused and the thinning body is accentuated rather than hidden.

Stage 3.

The third stage is the stage where help is sought or (in)voluntarily given. The patient is stopped and only then starts to feel the physical consequences, because the body is given rest. The help raises all kinds of fears. The fear of having to eat, of becoming fat and of losing control over eating and weight. This control is often temporarily taken over by the parents or the treatment. A dietitian will provide nutritional advice (eating schedule) that the patient must adhere to. This nutritional advice is usually aimed at weight gain. If the patient does not adhere to the rules set, other treatment will be required. This treatment is often more intensive or even clinical. The patient will have to learn to eat again and learn what is normal in this regard. She also usually has to gain weight, because her current weight is often unhealthily low.

Stage 4.

Stage four focuses on normalization. In stage three, the patient has withdrawn from the ‘weight loss race’ and has now resumed eating to some extent. There is also often (partial) weight recovery. The patient is certainly not better yet, even though many people think so. Anorexia is often associated with not eating and being thin, but there is much more to it. Even if the patient is now eating again and has a healthy weight, the eating disorder is still very much present. Recovery is a long process, the average patient is in treatment for six years before she can say she is (completely) better. It is very complicated for the patient if the outside world thinks that nothing is wrong anymore, while the real treatment is only now beginning. The patient will practice eating ‘forbidden’ products (which she was not allowed to eat during the development of the eating disorder) and taking on challenges through therapies. Normal life can be resumed to some extent if the somatic condition allows this. The patient can start school, education or work again and take up hobbies and sports. The practitioner will also work with the patient to determine the reason and function of her eating disorder. Many people use their eating disorders to hide, avoid, forget things or to feel more beautiful and confident. At the end of the day it often turns out that the eating disorder has not gotten them where they wanted to be. During the treatment she looks for a way to deal with her underlying problems.

Stage 5.

In the fifth stage, the eating disorder is under control. This does not mean that it is gone, but the patient can deal with the eating disorder and challenge it. The weight is restored and the body is healthy. This gives room to continue working on other problems. If the eating disorder is still strongly present, there is insufficient room for other treatment. Weight recovery is also important for follow-up treatment, because when the patient is underweight the emotions are ‘confused’ and the patient cannot feel things properly. The patient may also feel depressed due to being underweight.Sometimes further treatment is not necessary at all. The patient can lead a normal life again and enjoy life. An APK procedure (anorectic periodic inspection) is usually initiated to monitor whether things continue to go well. During this process, there is a conversation every few months and the patient is weighed to keep the weight under control, this is to identify and prevent a relapse.

Stage 6.

The sixth stage is the stage of freedom. The patient has been able to put the eating disorder behind him and can truly enjoy food and life again. She is no longer dependent on treatment, even though there are many who will always carry a small part of eating disorder with them. The chance of relapse is extremely small.She laughs and is beautiful, because she radiates.

Complications.

Unfortunately, not every patient goes through these six stages. Only 21% of patients recover, this is 30% of the 70% who improve. Now, improvement is a broad concept, so this also includes patients who are in better shape than when they entered care, but may still be very ill.Everyone goes through the stages at their own pace. Many patients get stuck at a stage where they relapse and bounce back.There are also many who get stuck in one of the stages, especially the fourth stage. These patients often also have comorbidities. This means that there are underlying problems that are often intertwined with the eating disorder and therefore perpetuate each other. The patient cannot continue to work on the eating disorder because the other problems get in the way, but conversely, she cannot work on these problems either because the eating disorder is still too strong and possibly the weight does not allow this. The longer the patient continues an unhealthy, eating disordered way of eating, the worse the somatic condition will become. A chronically underweight and poor diet can cause infertility, osteoporosis, stomach and intestinal problems, heart problems, kidney problems, sitting and lying problems, damaged teeth (due to vomiting), severe fatigue, electrolyte disorders (disrupted balance of minerals such as sodium and potassium due to vomiting) and even cause death. But this also causes the patient to deteriorate psychologically. Depression is common, but fears can also develop into anxiety disorders, addictions can worsen, the patient can become very lonely due to isolation from the outside world and can develop suicidal thoughts. It is becoming increasingly difficult to get out of the downward spiral.Sometimes all possible help is not enough and the patient is ‘given up’. This means that the patient does not work towards recovery during treatment, but towards improving the quality of life with an eating disorder. The patient then becomes a chronic eating disorder patient, also known as a LES (Long-term Eating Disorder).As many as 5-10% of patients die, usually from malnutrition, heart problems and suicide. This makes anorexia the mental illness with the highest mortality rate.

Last message.

In short, an eating disorder is not nothing and is often extremely underestimated. If you recognize this (in someone around you), seek help immediately. Early recognition and help greatly increases the chance of recovery.I, as an expert by experience and a patient for six years now, have written this article to create more understanding for patients. The best thing you can offer a patient is love. The part about diet and weight lies with the treatment. Let them know that you care about that person, that is the most beautiful thing for them to receive.