Twelve lessons over twelve months : honesty is the best policy… albeit brutal when from year twos

When in hospital, you are mostly protected from ‘triggering’ comments. Note ‘mostly’, as everyone has different triggers… Plus, with the highly irrational thought patterns one may experience when struggling, many comments can be twisted when heard. This has led, in my experience when in hospital, to some more contentious topics of conversation with staff who are slightly less experienced. But, on the whole in hospital you are in a protective bubble. Aside from maybe the odd comment, overall people know that some comments are like a red rag to a bull when it comes to eating disorders, what comments go down like led balloons and which ones are helpful. Once you are out of hospital, you are not protected to the same extent. You cannot control others around you in what they say or how they react. Not everyone will be as sensitive or gage what is helpful to say, understandable given the aforementioned irrational thought processes suffering from an eating disorder can lead you to have. Given I struggle to understand myself sometimes, expecting another to know is a big ask! Comments that are intended to be kind can be completely twisted. For example, comments such as ‘you are looking well’ can be a definite taboo phrase, but one that rationally is kind to say. Why would you not want to look well?! For me, this comment was translated as multiple things which would justify my eating disorder. I could hear it, for example, as ‘you are absolutely fine, why are you having treatment and using resources of the NHS if you are looking well’. Alternatively, I could hear it as the fact I have been taking too much, thus being greedy and selfish. It is not the belief I am fat, but a root belief of being burdensome. This comment would reinforce thoughts that I am ‘too much’, greedy, wasting space and a bad person. I can see the irrational nature of interpretations of these comments, but they somehow are what becomes heard. Whilst in hospital people receive training in what (or what not) to say, outside people do not receive training. At a certain stage, it is your own responsibility to learn what comments trigger you, when you can expect them (ie. At family gatherings) and how to manage your behaviour to prevent setbacks.

There are two situations I reflect on that occurred within my first twelve months of freedom which taught me this lesson. Firstly, I start with the brutal honesty of kids. Brutal, yet also brilliant honesty, which made me think about the influence I was having on others younger than me. I was initially hesitant to be involved due to anxiety and the aforementioned youthful ‘honesty’. But, with a push from my mum and realisation children aren’t actually as scary as I initially thought, for some time now I have been volunteering at a primary school. I absolutely love this, doing both reading (who doesn’t love revisiting some Roald Dahl!!) and taking my little naughty sausage dog in for some pet therapy. It was during this pet therapy when I faced a slightly interesting moment. On being told it was one of the children’s birthday from her friend, I was told I had to stand and dance with them. I found myself dancing with my two left feet, a sausage dog and two year twos. One then suggested we needed some music, proceeded to pick up a squeaky dog toy and said “I shall squeak this toy, and you must dance with your skinny little legs. I will squeak the toy at your skinny legs and bad dancing”. It was at that point I then found myself dancing, again very badly, accompanied by a squeaky dog toy, feeling slightly scared of the two year twos. I was then told there was no way I was 24, and that at most I was about 15. Though I thankfully could just laugh it off, it made me recognise yet another lie anorexia convinces you of. You may not believe it, but people around you do notice your behaviour and illness. For me, developing anorexia was an attempt to shrink and disappear, but it actually consumes more attention than you will ever have had before. Whilst I want to be a reliable, comforting role model for those I am meeting at the school with Fig, anorexia will demand all aspects of your life. You cannot be a role model if you are unhealthy, and that will be picked up through numerous ways. Therefore, though slightly taken aback by the comment, I am thankful for the brutal honest approach and unfiltered nature of children. I would not wish anorexia on my worst enemy, so realising this was their thoughts and vision of me made me reflect on why recovery is important.

The second occurrence was a more upsetting one, but one that again shows the deceptive nature of anorexia and confusion living with it can cause. It again showed me out of hospital you cannot control others behaviour, but you can control your reactions and actions for a better outcome. I was in Sainsbury’s, sadly in the usual ‘daze’ of wandering aisles having only gone in for one thing, when I noticed some school pupils following me. At the ripe old age of 24, I was probably a good ten years older than them, but even when healthy have always been confused for being much younger! I’ve decided, though children may not be as scary as I initially thought, teenagers are terrifying… This group of students proceeded to laugh at me, take a photo with an appalling attempt of being discreet, returning to their pack to comment ‘how is that even possible’. I guess one advantage was that this awoke me from my dawdling and leave Sainsbury’s, saving my brother who had probably sat in the car park thinking I had been swallowed by the aisles. It did, however, leave me very anxious and upset. I do not say this story as a woe is me how awful of these people, but to highlight that anorexia will present to others something you may be blind to. Getting in the car, I asked my brother if there was something about me I wasn’t seeing, and he (politely) stated that to others weight loss with anorexia can be shocking. Anorexia in itself is not a ‘visible’ illness, and not everyone will be underweight, but at that time I was struggling and couldn’t see it. Body dysmorphia, which some may struggle with alongside their eating disorder, can cause you to see something completely different. This can be exacerbated when malnourished. I was looking in the mirror and held the belief I wanted to shrink myself, projecting this belief onto my body thus seeing someone who needed to be smaller. It is not the stereotypical belief I want to look in the mirror and see a model or a super-skinny influencer. But, with the sometimes overwhelming belief that in order to be in control I have to shrink and obsess over numbers, I do not see what others see when I look in the mirror. This is confusing, as how can what you see physically be a lie? Unfortunately, I do not have an answer to that, aside from the knowledge that a malnourished brain impacts perception. To these teenagers I did appear different, something I did not see or realise given my distorted self image. My brother kindly was there to confide in following this event which showed me, yet again, anorexia will take so much. It consumes your identity. I don’t want to be seen as the alien in Sainsbury’s and noted for that. I want to be someone kind, respectful, live by meaningful values and actions and allow these to be the attributes people note. Anorexia will not allow this. Anorexia will cause people to give you attention, but attention you do not want. At the time it may feel comforting, but overall it will only impact relationships and interactions. It will impact how you are seen as a role model, family member, friend, colleague or acquaintance.

It is important to remember most comments come out of kindness and a place of love. A comment of ‘you are looking great’ may be celebrating the fact that you look more alive or outwardly happier. Alongside this it is a socially commonplace remark that should be appreciated in another’s eyes. No one would be happy to hear ‘my gosh you look like you are about to bite the dust’ rationally. Someone struggling with an eating disorder might, as it could momentarily signify to you are doing a ‘good’ job of being ill, which becomes a sole identity. Someone complimenting you on you seeming well is a sign someone cares, which can threaten an eating disorder. When one is struggling with an eating disorder, they are consumed. It does not share the need for connection with others, and will greedily dictate a sufferers life and relationships. In my own experience, I did not care for relationships when really struggling, as I just wanted to live in the control of my anorexia. A ‘safe’ bubble where I felt protected. This results in comments from others being misinterpreted. As the ED demands sole concentration on it for its survival, it will twist what is being said to fuel its own existence and sadly turn you against those who truly care. Alongside comments from others intended to be kind the harsh reality is some can be less well-intentioned and unkind, as shown in the Sainsbury’s anecdote. You can’t expect everyone to understand. It is in these moments when it could be beneficial to review what relationships serve you well and which would be important to continue building as you create a life outside hospital. This can be hard, as it could involve seeing certain people less or being assertive to your needs, but sometimes in order to help others you have to help yourself too and be selfish. If someone doesn’t understand your needs once you have tried to build a relationship and is simply nasty or dismissive they do not deserve your time. Comments may also come from those you don’t know when you are in public, which I have learned shows more about them as individuals and what values they wish to live by.

This has, once again, ended up farrrr too long and a huge ramble. Reflecting on the title, out of hospital you will be faced with some brutal honesty. You have to learn how to react to it, as challenging as that is. This may be through being more assertive and letting someone know how you feel, but you still cannot change how others will behave or what they will say. To negotiate challenging comments, there are a few things one could do to help themselves. These will all be individual, but for me I’ve found having someone trusted to confide in can help. This may be a parent, sibling, friend, support worker or someone in a therapeutic setting. You can also have a safe space to reflect and explore comments you hear. Thinking about why they were triggering and how to navigate them in the future could be beneficial, and done through an activity like journaling. You could plan prior to events where comments may be slightly more predictable. For example, we all know the Christmas talk of ‘gosh I’ve eaten so much’ and weight loss conversations which ensue. If you know these can trigger you, think of responses in your head, safe spaces to retreat to if you need some time out or techniques that can help, such as little flashcard reminders. Hospital is a ‘safer’ contained environment where people are aware you are ill and *usually* what to say. Out of hospital, you will meet all sorts of people as you are not living within the same four walls of staff and other patients. Though this can be deemed a huge exciting aspect of discharge and freedom, yet it brings more chances of unexpected comments. BUT, navigating these and remembering you are dictating your future path can keep you on track. It is a tough lesson, but one that also helps you become resilient, stronger and more self-aware. Honesty is the best policy as it helps you realise more about yourself, the impact you are having on others, but also who you want in your life. You don’t want anorexia in your life and you also don’t want those who are plain nasty in their comments. Cut out negativity and celebrate all the amazing people! They may remark on how well you are looking as you choose life over surviving, but that just highlights the love, care and compassion others offer that anorexia will not.