When you saw my 25-year-old daughter recently and said, “You look really well,” did you have any idea what you were saying? As a so-called eating disorder professional, I expect you to know that the words, “You look really well!” sounds like “You look REALLY FAT!” to someone in the throes of Anorexia Nervosa.
If a friend or neighbour were to say that to my ill adult daughter, we would be upset but would appreciate that they were simply trying to be nice. You, on the other hand, should know better!
The fallout from that one flippant comment was that my poor daughter, who was on her way to buy some food, then struggled to eat her currently measly meals. She rang me in tears! It took three days … THREE DAYS … to calm her down and get her to see that she does need to eat, that she does deserve nice food, that she still has a very long way to go before she is anywhere near recovered. All because of that comment, and especially because it came from you.
And that’s another thing. Something else you don’t seem to know is that recovery from an eating disorder is possible. Why don’t you know this? From what I hear from all the ED support groups I’m in, it seems that most ED professionals in the UK simply don’t bother to update their learning. You haven’t bothered to educate yourself and research what the latest evidence-based treatment is, have you? Why not?! You have a duty of care! Don’t just allow them to ‘function’ in society. It’s not fair to them or their families!
In your defence, it may be possible that you’re rushed off your feet in the NHS mental health services, which are currently extremely lacking in resources. These resources should include a good team of ED specialist clinicians – including psychiatrists, therapists and dieticians – to cope with the sadly ever-increasing demand. This team should be fully trained and kept updated with the best evidence-based methods for out-patient eating disorder treatment. I blame the Government for these lack of resources. But in your particular case, I know that you’re a private CBT therapist who does have the time to research. You really should know better!
Here are the things I wish eating disorder professionals in the UK’s adult mental health services knew:
- Recovery is possible for most people with an eating disorder, even if they are labelled as being ‘SEED’ – Severe and Enduring Eating Disorder.
- Eating disorders are not a choice – they are brain-based mental health illnesses, being a complex interaction of genetics, biological, environmental and psychological factors. They should be taken as seriously as cancer as they are also the most lethal of all mental health illnesses.
- Families – parents and/or spouses – should be encouraged to help during the treatment of the adult sufferer. It is not their fault that their adult child or loved one has an eating disorder!
- Just because someone ‘looks’ a healthy weight doesn’t mean that they are – state, not weight (although weight is important too). For the record, my daughter doesn’t even look a healthy weight. Which is why I’m so angry at this so-called “professional”.
- Do not demonise any food groups – all food is good. In fact, high fat calorie dense foods are essential to help the brain and body to fully recover.
- Do not tell your patients to be careful about what they eat if they have a restrictive eating disorder such as Anorexia Nervosa. It is now recognised that it is important to honour extreme hunger cues and eat what your body is telling it to eat. Read this, and learn!
- A meal plan for someone with AN needs to be no less than 3,000 calories and should be treated as an absolute minimum. If they feel that they can eat more, great! Encourage them to do so! They need to for the body and brain to recover properly. Do not tell them to “stick to the meal plan” – tell them instead to use the meal plan as the bare minimum.
- Do not tell the family: “Don’t go on about the food” – food is medicine! Obviously, encourage them to talk and do other things too. But teach the families to properly support the adult sufferer at mealtimes with loving but firm encouragement, and to provide lots of distractions afterwards to help stop the anxious, guilty thoughts, and to stop any dangerous behaviours (purging).
- Remember that as the bodyweight improves, so their state of mind worsens. Anxieties are very high and will need careful management. Do not tell them to reduce or slow down their food intake! The message here is to work through the pain. They need to walk through hell to get out into the light of recovery in order to have a happy, fulfilling life. It will take time – months, a year, or more – before those ED thoughts eventually quieten to a manageable level, or even disappear for good in many people. And it will take a lot of therapy and support.
- It is essential to go over their original target weight – too many people (children too) are given target weights that are far too low, and will often be told to stop at 90% of it. All this does is to keep them in their illness, keep them in a living hell, in purgatory. For true recovery – in other words, to stop or vastly reduce their ED thoughts and behaviours – their weight needs to go over the target weight by 10%.
- Remember to never, ever, speak about needing to stop eating at a certain point. Once the body is putting on weight, the metabolism may start to become hypermetabolic and they will need to eat more, not less. Much more. Eventually, the patient may end up freaking out about their ‘fat tummy’ syndrome. This is normal. They must continue to eat. The body will eventually even out its fat stores.
- BMI is not a good indicator of weight, especially if the sufferer is over-exercising (something which needs to be stopped). However, it seems to be the only measure currently used. So, do not wait for the patient to reach a life-threateningly low BMI of 13 before getting them into an ED ward (as most mental health services seem to these days), because people can die at a BMI of 15, 18, and even higher if their eating is very disordered. The lowest BMI one should be aiming for in recovery is 20-22, and even then their state of mind will be very anxious, and they will need careful monitoring and support for months, or even years.
- Do not discharge from services at anything lower than a BMI of 20-22 (as my daughter was also told a few years ago), unless or until you have solid evidence that their state of mind is sound, and that they no longer engage in ED behaviours. Also, ensure that they have all the therapeutic skills needed to cope if something should trigger them in the future.
- Finally, if you want to say something nice to them, compliment them on their hair, dress, top or shoes. Compliment them on something good that they’ve achieved. Or even ask them how they’re feeling. Don’t assume, when they say: “Fine,” that they are. They’re not – they’re screaming inside because they have a brain-based illness that is telling them that they’re not worthy of recovery, not worthy of good food, and all sorts of other dangerously negative things. Never, ever comment on their looks or weight. Tell them to keep strong and to keep fighting. Remind them that recovery is possible!
Essential reading for ED professionals:
- ‘Decoding Anorexia’ by Carrie Arnold
- Kartini Clinic Eating Disorder Treatment, Dr Julie O’Toole
- Eating Disorder Recovery for Adults blogs by Tabitha Farrar
- FEAST – Families Empowered and Supporting Treatment of Eating Disorders
There is, of course, a lot more out there too, but these are what initially spring to mind. The UK’s ‘NICE Guidelines’ also need to be updated, so refer to them but please don’t rely on them!
So, dear Professional. Don’t think that you know it all unless you’ve read several cited articles on eating disorder treatment dated within the past five years at least. And remember that everyone is different and has different needs. Get to know your patient, work with them and their families, and understand the right and wrong things to say.
A Mother Who Wants her Daughter to Recover and Have a LIFE!