“You are looking well today.” My aunt’s words became frozen in time. As a 13-year-old with anorexia nervosa, my brain sprang to high alert. Thoughts raged: “I’m fat. I look horrible. I must eat less.” Recovery roared in reverse.
That incident happened decades ago, and I have forgiven my ignorant aunt, but the same well-meaning comments are being made today to people with eating disorders, by not only caring family members, but also support workers, and the damage is severe. Recovery, instead of supported, is impeded.
These upsetting experiences have inspired the creation of a “do and don’t say” list for use by community-based support workers when caring for clients with an eating disorder (ED).
Notes about what to say and not to say, attached to a client’s file, can go a long way in helping support workers to familiarise themselves with challenges relating to their client’s illness. Such a document can help to ensure that there is at least a baseline understanding around the use of sensitive and mindful language prior to commencing their support work sessions.
Prior knowledge of potential triggers for a person with an ED is crucial. Triggers for a person with an ED can occur in unexpected ways and unintentionally spark regression. Awareness is especially important in relation to comments on appearance and eating, or talking, about food.
At minimum, I would like for each support worker to be required to sign off on a document that contains tips like those listed in this post, to ensure the list has been read and understood prior to commencing as a support person with anyone with an ED. Knowledge, from trusted sources, such as those listed in this document, is the best tool when helping someone with an ED.
Women with many years of ED experience have joined me in compiling 20 recommendations and insights on how to be an effective support worker when the client is recovering from anorexia nervosa. Their voices appear in each of the following recommendations. Some of these everyday tips are repeated in different ways. This is because they are so important:
Don’t say, “You are looking good today.” Maybe I am looking good, but the way l hear this is, “You are looking fat”. Such a comment has been enough to make me stop eating. I know it is a compliment, and that’s nice, but it can set off a lot of negative thoughts and spark regression. Best to say, “How are you today?” And not focus on appearance.
Avoid comments about calories, or other components of food when eating or at any time. (l worked hard every day for many years to break and re-break this cycle. It is a very destructive pattern to get into and, when supporting someone, it’s best not to mention what is in the food or how it affects the body). Distraction from food is good – such as with a puzzle, or book reading, or movie.
Avoid comments about how many steps, or the level of exercise, that has been taken for the day; that is, avoid referring to a gadget that monitors the amount of exercise. (This may be okay for a healthy person but can be triggering for someone who has had to follow extreme destructive rituals of exercise before or after they eat or even think about food.)
Don’t assume I am comfortable talking about my illness. If in doubt, please ask. Nobody is perfect and many triggering things are said due to ignorance about EDs and how they work. This is why it is important for support workers to understand that the ED is a way (a self-harming way, unfortunately) of coping. An ED is not a choice; it is an illness in the brain. Underneath the visible food struggles is a whole lot of other stuff and the core issues of why the illness has developed.
Understand that good foods and bad foods are a part of an eating disordered pattern of thinking. When out for a coffee or a meal, problems can occur if the support person mentions they are trying to lose weight, or eat in moderation, while the person with the ED is trying to follow a strict food plan (because food is their medicine). Making a choice in a café or restaurant can be very confronting when the head talk becomes loud and choosing what to eat becomes a battle of thoughts. Reassurance that whatever is chosen is okay is the best way to handle these situations.
Do not say to your client in a café or restaurant, “That looks yummy, but l am trying to be good, so l will eat this.” This is not helpful. It sparks instant anxiety on my part when l hear that because my choices are never right in the eyes of my ED and of course, it wants me to have nothing or have something next to nothing. On the other hand, l feel encouraged silently when l see someone enjoying their food, whatever it is. So be mindful; this is all that’s needed.
You don’t have to have had an ED to understand the illness if you are willing to learn or seek guidance. The client may not be the best person to ask, depending on where they are at in their recovery. Even though they may look healthy, the tormented ED thoughts can be still raging and can be dominating and manipulative.
In the supermarket, please understand there is a lot of fear involved but also that I require a lot of courage to actually buy food for myself. That’s why it is usually the food for the cat which comes first, and the best of the best at that. Whatever happens in the supermarket, never assume that shopping for food is fun or easy. The best thing to say in all of these situations involving choices and eating and issues around food is, “Good work” or, “l know that wasn’t easy.” Sometimes, l am silently screaming in the supermarket trying to make a choice.
Validate the hard work of recovery that goes on every day and is extremely exhausting.
Just because a client appears happy, does not mean that they are okay.
Thank the client for being brave. This goes a long way in fighting the guilt associated with having “a good time”. The ED does not want you to have a good time. Ever.
What you see is the tip of the iceberg to what you don’t see, but always know l am grateful to anyone who is just human and just themselves. Support work is not about doing a perfect job, or having to walk on eggshells, it’s being sensitive and asking if something is understood or not understood.
Do not comment or draw attention to what someone is eating. Make no judgment about what is on my plate, or anyone else’s plate.
Do not say, “Just eat!” Avoid comments such as, “The solution is so easy.” For people living with an ED, eating is not easy.
Don’t assume that someone with an ED is not making a genuine effort to eat. Conditions such as Irritable Bowel Syndrome (IBS) or gastrointestinal discomfort are not an excuse but a reality.
Do not say, “You are looking better,” or “You are looking healthier.” Such comments can be heard as, “You are looking fat.” Instead, compliment a smile, hair, clothes or other accessories.
Do not talk about weight, calories or foods you avoid when you are on a diet. Instead, compliment the taste or flavour of the food or just enjoy the food without comment – this models normal eating for the client.
Do understand that supermarkets can be a scary place – many options can create fear amid indecision. Perhaps invite the client to create a list beforehand. Perhaps offer to help them to do this, and encourage them to focus on getting the items they need and getting on home.
Do not comment on the size of what the client is eating – your comment can be translated as “I’m a pig,” or “I’m a failure”.
If you are unsure how the client feels or why, do ask – most clients are happy to educate and inform you about this difficult illness, or else you can contact good resources, including those listed below, which offer information to educate carers. Getting educated is good – the more people understand EDs, the easier it will be to give help and support.
Australian resources include:
Thank you to Karyn, Anne and Sarah for contributing to this article.