What I want you to know about eating disorders

It is Eating Disorder Awareness Week. Here are six things I’d like the world to know about eating disorders.

Eating disorders are serious mental health illnesses

There are three things in this statement I want to highlight. The first is that eating disorders are mental health issues. There may be physical side-effects, as there are with anxiety or post-traumatic stress disorder, but eating disorders are an illness of the mind where one of the biggest risks to life is suicide.

Secondly, eating disorders are illnesses. They are not a lifestyle choice. There is nothing glamorous about them but equally there should be no shame attached to having an eating disorder either. One of my most-detested phrases is that someone has “admitted” to having an eating disorder. You wouldn’t say someone “admitted” to having cancer or depression. We should not use this language to describe the process of telling someone about an eating disorder either.

Finally, eating disorders are serious. They have a high mortality rate but, as importantly, every area of life can be compromised by the anguish of these illnesses. For this reason alone, we need to take them seriously.

There is no hierarchy of eating disorders

We are used to treating all cancers seriously. We don’t dismiss someone’s experience of cancer because it is in stage one or it occurs in a particular part of the body. We understand that anyone who is given a cancer diagnosis deserves compassion, treatment and support. We recognise that a cancer diagnosis at any stage of the illness can cause fear and distress. So why do we think it is okay to perpetuate the myths of hierarchies in eating disorders?

It is not okay that body mass index is used to determine whether someone is offered treatment. These measures do not tell us anything about a person’s mental distress. Nor is it okay that people with a diagnosis of bulimia, binge eating disorder or other specified/unspecified feeding and eating disorders often find it so hard to access support. Again the particular relationship with food indicates nothing about the mental suffering nor the stage of an illness. Even if it did, someone shouldn’t have to suffer more in order to be taken seriously, which brings me to my final point in this section …

I want to debunk the idea that only those with a formal eating disorder diagnosis need support with disordered eating. Again, turning to the analogy of cancer, we would never question the treatment of pre-cancerous cells. We would recognise it as an important and effective part of preventing illness. Similarly, those who are struggling with symptoms of disordered eating, but who do not meet the threshold of the diagnostic criteria, deserve to have their experiences taken seriously. This is a sensible, cost-effective and, most-importantly, caring approach to take.

Eating disorders can affect anyone

Eating disorders can affect people of all genders, age, race and ethnicity. Of course, there are ages where the illnesses are statistically more likely to start and population groups in which the illnesses will be more prevalent. But that is not an excuse to ignore those in different population groups, or at different stages in life, who become ill.

There are some brilliant books and organisations that talk about this. A couple of books I found helpful to read to broaden my understanding in this area were The Eating Disorders Sourcebook by Carolyn Costin and Midlife Eating Disorders by Cynthia Bulik. 

Eating disorders are not typically about …

  • Food: Thoughts around food, calories, exercise can be all-consuming for someone who is suffering with an eating disorder. But eating disorders are not typically about food. They are about how a person feels about themselves, how they cope and (perhaps) things that have happened in their lives. It is important to note too that restricting or overeating are not the only behaviours that are associated with eating disorders. Some people’s relationship to exercise, for example, might be the primary way in which an eating disorder takes form.
  • Weight: Change in weight may be a visible physical side-effect of an eating disorder. But eating disorders are not about weight: they are mental health illnesses and someone may be very unwell without it being obvious to those looking at them. Similarly, people may experience fluctuations in weight without having an eating disorder.
  • Control: Even when someone’s eating disorder is, for them, about wanting to feel in control then the real issues are often to be found in the things that have created such a need for control. It might be a fear of not being good enough or a response to trauma. Whatever the cause, it is the illness that is actually in control when someone is in the grip of an eating disorder.
  • Laziness, a lack of willpower or not being educated about diet: People who binge eat often know more than the average person about what makes up a healthy diet. Similarly they may show incredible discipline in other areas of their lives. Even when this is not the case, to assume that binge eating is a symptom of a person’s character rather than, for example, underlying mental health issues is unhelpful. A diagnosis tells you something about how someone is suffering. It does not tell you who they are as a person.

Ultimately, everyone’s experience of an eating disorder will be unique to them. Only they can really tell you what may have led to their illness and what factors might have perpetuated its development. Even for them, the answer to these questions may be elusive. Therapy can provide illumination sometimes but that won’t always be the case. We can’t always explain why we get ill. At the end of the day though, what matters for everyone is being able to access the treatment that allows them to imagine a life beyond the eating disorder, irrespective of the cause.

Carers need support too

Caring for someone with an eating disorder is tough. It is like caring for anyone you love who is seriously unwell: it takes an emotional toll because it is hard to see them suffer and to feel so helpless.

Carers need support. Not because they caused the eating disorder. Not because the person who is unwell is being difficult. But because when someone is ill then it is hard for everyone involved.

If you have an eating disorder, I want to be really clear here. If your loved one is affected by your illness that is not your fault and it is not reasonable to expect you to care for their mental health when you are ill.

The truth is we can all support each other better when we are well. So if you want to help a loved one, whether you are a carer or someone struggling with an eating disorder, then (if you need it and/or think it could be beneficial) consider getting support to help you maintain your mental health. Nobody should have to face eating disorders alone.

Recovery is possible

Far too many people with eating disorders are told that recovery isn’t possible. Yes, recovery can take a long time. Yes, recovery can be tough. Yes, it is often more difficult than it should be to access good treatment in a timely way. But with the right support in place then recovery is possible.

One of the most hopeful accounts of recovery I have read is The Reading Cure by Laura Freeman. I want to hand the final word to her.

In writing this book, I want to say that it is possible to get better from an illness, to make for yourself a life worth living, but also that there will be days when it seems impossible. There will be times when you think: I cannot sleep, I cannot eat, I cannot hear myself think. I cannot remember how to be happy. I cannot keep going. I say: keep going.

If you want to speak to someone about an eating disorder or you are feeling low then there are a number of places you can talk to someone. Here are some resources available to those in the UK but please remember to do your own research and seek professional guidance.

  • BEAT: A UK charity that “exists to end the pain and suffering caused by eating disorders”. Services include a helpline and online support groups.
  • The Samaritans: A charity that “offers a safe place for you to talk any time you like, in your own way – about whatever’s getting to you. You don’t have to be suicidal”.
  • The NHS: The NICE Guidelines are clear about the treatment someone with an eating disorder should receive within the NHS. I know the reality is not always that simple but remember any failure to offer appropriate treatment is a reflection on the state of service provision. It is not a reflection on your value as a person. Your suffering deserves to be heard with compassion and respect. You deserve to receive appropriate treatment.
  • Private counsellors: If you want to find a counsellor privately then organisations such as the BACP and UKCP allow people to find someone in their area. Look for someone who is well-qualified and experienced in working with clients suffering from an eating disorder. Again, get professional advice and do your own research if you’re thinking about engaging support of this kind.

Be gentle with yourself.

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