As someone with a PhD in eating disorders, I’m blessed with a good library on the topic which my husband has been readily working his way through. One thing he has noted is a huge emphasis on what you mustn’t say or do but not a lot of suggestions as to what it IS okay to say.
It’s important to know the key phrases and sentiments to avoid because, sadly, it’s very easy for even the most well meaning friend to send us into a spiral of self-destruction with a few choice words so we’ll consider the don’ts – but I’ll redress the balance with some alternative dos too.
My don’ts below are all inspired by real things people have said to me in recent weeks as I face my own battle with anorexia. If you recognise yourself in here, please don’t beat yourself up about it. It’s incredibly hard to get this stuff right and once you’ve read this you’ll be better placed to support. And on a positive note – all the ‘do’ suggestions also come from real life scenarios I’ve experienced too. If you recognise yourself in there, thank you.
Before you say anything to someone recovering from anorexia, especially if it’s anything to do with food, weight or appearance, think about the most warped and twisted way your words could be wilfully misinterpreted to make them into a negative rather than a positive. Then you’re probably approaching the milder end of how your friend’s eating disorder will have them interpret your words.
Whilst we’re battling hard not to lose weight, those around us are relieved to see things stabilising or getting better and in the spirit of encouragement, they will often share their glee with us. But anything you say which suggests we are looking or acting more healthily will be interpreted as a failure on our part. Even though we may be engaging with recovery, the anorexic voice is never far away in the early days and will misinterpret comments around food, weight and appearance very negatively.
Things not to say include:
You get the picture. Anything that indicates we are heavier or healthier will be misinterpreted.
Instead of telling us how we look or seem, ask us how we are. The tricky thing with anorexia is that as we start to look better, we may feel a lot worse. We will be fighting feelings of guilt and shame, anger and sadness at every mealtime. We may also be suffering with physical complications of refeeding and we are likely to be battling anxiety, depression, self-harm or OCD alongside our anorexia.
For many people a simple ‘how are you?’ that is genuinely meant is the most helpful thing of all. We may not be able to articulate an answer. We may not want to – but knowing that you care enough to ask can lift us on the darkest days. If we can and want to find the words to express how we are, please listen and encourage us. Be prepared not to judge – don’t expect to understand how we’re thinking and don’t expect us to be consistent with ourselves. Inside our head is a battle between the little tiny part of us that is left that wants to get well and resume this thing called life and the great big ugly monster that is anorexia. We can’t always tell them apart and sometimes you’ll be talking to us, and sometimes to our disease. We want and say different things. Referring to the disease in the third person can help: – ‘I don’t think that ‘s you talking, it’s the anorexia…’
If you want to understand more about what we say vs what we’re thinking then my wonderful friends June and Cate wrote a book called ‘ED Says U Say – the eating disorders translator’ which is well worth a read.
We may be trying REALLY hard and perhaps you’ve noted that we’re making progress. Maybe we ate more quickly, tried a new food, forwent a ritual or ate more food than in previous meals. Each of these is an amazing achievement but acknowledging it will halt us in our tracks. We’re trying hard but the anorexic voice is ANGRY with us.
Mealtimes need to be as stress free as possible – this is a time to pull out your most mundane conversation. What’s on TV, the weather, your love of knitting patterns, good old cat videos on YouTube or the funny joke you heard on the radio earlier.
However, if your loved one has done something that you feel they should be really proud of, save it up and mention it at another time. It needs to be a time when they are neither worried about their last meal or anxious about the next one (these windows may be brief!) You don’t need to go into great detail and often you won’t need (and might choose not to) spell out exactly what you’re proud about because that can induce anxiety; but a quiet acknowledgment of a job well done can be positive for both of you. My husband did this perfectly the other day. I have been making good progress and he wondered about introducing an ‘unsafe food’ (sweet potato chips) to an otherwise safe meal. We discussed it well ahead of mealtime and I told him that if he put a realistically small, un-intimidating number of sweet potato chips on my plate that I would see how I felt at the time but could not promise anything. He reassured me that there was no expectation but that he was motivated to support me in trying new things as I felt ready.
I ate three sweet potato chips and felt incredibly guilty for a couple of hours. Many hours later, we headed out for a drink. As we said cheers my husband looked me in the eye and said ‘well done today. I’m really proud of you. You know why’. I knew exactly why and at that moment, I was proud of me too. Sweet potato chips will be slightly less scary next time now.
We are likely to have a lot of rules around food. Don’t try to cajole us or reason with us. If right now we’re not ready to eat a specific food, please respect that and let us get on with eating the foods we do feel able to tackle. By putting undue pressure on us to broaden our repertoire before we’re ready you are likely to hamper our ability to eat as much as we would have done otherwise as we’ll be in a state of panic and shut down.
Don’t assume that because we didn’t eat pasta last week that we’re not eating it this week either. Leave the options open for us and don’t make a fuss if we try something different. But once we’ve made our choice, just let us get on with it (this may be different if you have a key role in ensuring your loved one is following a specific meal plan).
I can’t do rice at the moment, but I recently graduated to the lower calorie end of curries which I’ve taken to eating with salad. Yes, it’s weird but I’m eating curry so keep shtum and let me get those slightly scary calories down me!
So the curry and salad thing. I get that that’s weird and when asked for at the bar may elicit questions or surprise. I can’t handle that so, yet again, my husband comes to the rescue and does the ordering on my behalf both making the substitution and making it crystal clear that not so much as a grain of rice can be present on my plate (otherwise I couldn’t touch the food). In doing so he’s actively enabling me to access a more challenging food type. The key thing here is to ask yourself how can you enable each meal to happen and make it as unstressful as possible for your loved one.
When people say ‘get well soon’ or ‘I know you can do this’ or other such well intentioned platitudes; it demonstrates to me that they don’t understand the enormity of the task before me. That’s okay because I’m only beginning to understand it now (if I am on a completely even keel in 12 months’ time I think I’ll have done really, really well). Being told get well soon can also be misinterepted by pesky demons as someone’s desire for us to stop bothering them with our illness, or can put pressure on us to make progress more rapidly than we’re capable of.
When we are first ill we might look really ill. We might be very thin, or we might have signs of self-harm. As we get better these visual cues heal and people think we’re fine. We’re not. Our bodies will be ahead of our minds and knowing that the people who care about us the most understand this and will continue to offer their guidance and support even once our weight is restored or our wounds healed, can be a key factor in helping us to let go of our illness. Whilst we come to understand that unhealthy behaviours can be hugely dangerous and damaging, they have the benefit of telling the world, I’m sick, I’m hurting and I need you. Reassure us you’re here for the long haul, even once we look okay and please mean it.
I hope this helps you a little to say and do things that are helpful. If you’ve said or done the wrong things in the past, that’s okay. Today is a new day and a chance to get it right. It’s important too, to talk to your loved one. Everyone is different and they may have their own take on what I’ve said above. Discuss it with them and make amendments and additions. We’re all unique and there is no one size fits all, but I hope you find this a helpful starting point.
Thank you to everyone who is supporting me through my recovery. I’ve had lots of very positive feedback about my open and honest approach to it so I will continue to share in this way, though I will admit that it is somewhat terrifying.
For those of you fighting the same, or similar demons – I wish you every success and the one piece of advice given to me which I was hesitant to take but have not, for a moment regretted, is reach out and talk to people. Let them know how they can help you and then let them do so. There is no need to battle these demons alone.
You can read the original piece and all of Pooky's posts on her blog In Our Hands.
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