Eating Disorder Awareness Week 2018, Awareness.

For Eating Disorder Awareness Week 2018, I wanted to create a series of posts that shared experiences of awareness, support and effects of the media. Whilst doing this I wanted to ensure the posts were far from triggering or stigmatising, by sticking to the mental health media charter and B-eat guidelines. Together, I believe the series of three posts are powerful without being harmful or reinforcing the stereotypes and misconceptions that we will unfortunately see this week.

1

For the first post I asked each contributor two questions on the topic of awareness.

Do you think grater awareness could have changed your experience, if so how?

“Of course there is no way of telling one hundred percent but I often think, if those around me, or even myself, were more aware of the signs and symptoms of eating disorders, somebody would have been able to notice and help me find support sooner. We all know by now the benefits of early intervention, I believe that a key point to this is awareness and in knowing the initial signs and symptoms to be aware of.” Nicole Williams

“I definitely think it would’ve helped me to realise I had a problem sooner – all I knew was that people with anorexia were thin, but I didn’t really understand any of the thinking behind it. It took me a long time to realise what was happening, and even longer for people around me. I also think that it’s really hard for people to know how to help because eating disorders are so misunderstood, in whatever form they take.” – Cara Lisette, Moods, Meds and Meals

“Yes, because I think at the time I really had no idea what was going on since I was only 12 years old. I recognised my behaviour changing but I did not know why this was happening or what was causing it. What first started as a desire to get fitter and exercise more quickly turned into restricting my food when I felt like I had no control over things happening around me at home. I did not know exactly what eating disorders were at that age and I wish that I had.” – Anonymous

“I think potentially it could have. Of course there are no straight answers when it comes to mental health as everybody is so different! But I think had there been greater awareness I could have picked up on it myself as I’m quite ‘in tune’ with myself, and my family could have noticed sooner and had earlier intervention.” – Hannah Chadwick

“I think greater awareness would’ve absolutely changed my experience. I think I would’ve come to terms with my illness and how serious it was/the damage I was doing quicker… maybe then it wouldn’t have taken me to the point of hospitalisation to actually believe what was happening. Also, in terms of support – if those around me had greater awareness, I wouldn’t have had to wait to reach out for help myself after 3 years, so it may have been picked up sooner and I may not have suffered for so long/it may not have become so engrained.” – Tallulah Self 

“I was ill between 2005 and 2008. This was before all of these high profile mental health campaigns (time to talk, heads together etc). There were still a lot of fear and lack of understanding surrounding mental ill health, especially eating disorders and I didn’t know much about it myself. I think greater awareness would have really helped, especially in my school. Teachers knew that I had been diagnosed with anorexia, but there was a huge gap in the support I could have received. Teachers didn’t seem to have much insight into eating disorders and no extra tuition was given which caused me to really struggle with school work.” – Liv Goodwill 

“Yes, definitely. If people had more of an understanding of eating disorders I think it would have been easier to get help and I don’t think I’d have become so ill.” – Becca 

“Yes, I think if my GP would have been more aware of what eating disorders were and how serious they are, I may have got help sooner, rather than being told my weight was not low enough. It would have been good for her to have known where to signpost me and how she could refer me to services, as this was a big hurdle in accessing treatment. I also think awareness of the general public could have changed my experience, because people would have been more understanding. They would have realised that just because I was no longer in hospital, it didn’t mean I was ‘cured’ and that, no matter how far into recovery I am, there are still days when I may need a bit of a helping hand.” – Rosie Evans

“I think when I first became ill about ten years ago, I didn’t have much awareness of eating disorders myself and didn’t fully understand what was happening to me psychologically. It’s positive that there is more public discussion of eating disorders now so that people might spot the signs sooner, even in themselves. But a lot of the public discussion of eating disorders in the media and in passing conversations I’ve had recently since I’ve started speaking out are ill-informed and can be damaging and triggering for sufferers. We really need to move the discussion on from the focus only on weight and clothes size, which seem to feature very prominently and often in the headlines of media stories. I also think greater awareness by GPs would have helped me access treatment sooner. The first GP I saw simply told me I needed to eat more and sent me on my way. Over the years, I’ve had various responses from GPs that have shown me even the medical profession needs greater awareness of eating disorders and how some of their comments can be triggering.” – Hannah Bird 

“Yes I do. I think if I had learnt about different eating disorders earlier on in life then I would have realised that it was normal to experience what I did.” – Abbie 

“I believe that greater awareness of the issue with Type 1 Diabetes and eating disorders could have helped a lot. Growing up, there was virtually no discussion about eating disorders/ mental health in general in my diabetes appointments. Given that there was so much focus on food from a young age, it’s not a shock that T1Ds are 4 times more likely to develop eating issues; what is a scock, looking back is that lack of awareness among diabetes services. It meant that, when it came to accessing treatment for my mental health, i often felt in no-mans land. The diabetes team were hesitant to get involved in the mental health side, as they felt unqualified, My first IP admission, meanwhile, was so difficult for my diabetes mangement at first, as they were essentially learning as they went. It’s why the charity “diabetics with eating disorders DWED” is so important and i am passionate about raising awareness with diabetes services.” – Sophie Harrison, Bumble and Be


How do you think we can create greater awareness?

“I think sharing peoples personal experiences of eating disorders is key to raising awareness. Sharing not only the facts and figures but what it feels like. I have seen the impact of sharing my experience with health professionals, teachers and students, both in raising awareness and reducing the stigma.” – Nicole Williams

“Talking! And not just about anorexia. Although there’s not a huge amount of coverage about eating disorders in the media, the information that does exist is almost always about anorexia, when it’s actually the least common. Thousands of people struggle with binge eating disorder, purging disorder, bulimia, and various atypical versions of these, yet are made to feel as though these illnesses are invalid or aren’t as serious as anorexia because they are spoken about so rarely.” – Cara Lisette, Moods, Meds and Meals

“I think there needs to be more education about eating disorders within the school setting and within the education sector overall. I think there should be an inclusion of eating disorders in general PSHE classes in school starting from Year 6 since they are developing at such a young age now which is so sad. The only time I came across eating disorders throughout my school years was in A Level psychology as a topic which we didn’t actually do but was an option to study.” – Anonymous

“Speaking about it in schools could definitely increase awareness. I know for me, I developed anorexia when starting my GCSEs and at that time you’re spending a lot of time in school so by there being more information about it there, then people will find out more. I do also think more information in the media in a more realistic fashion. Not just bombarding the public with general facts, but warning signs to actually look out for – the same as is done for a physical complication.” – Hannah Chadwick

“We can create greater awareness by talking about these issues! Not hiding, shaming, feeling embarrassed, stigmatising… we need to encourage positive, educational and productive conversation – I think the media could absolutely do a better job at this. Too often are eating disorders stereotyped in the media, reinforcing stigmas and the ‘wrong’ kind of awareness, which is not productive and just makes things harder for those living with eating disorders. This is why I use film to give people a voice and engage people in conversation, as well as challenging the ‘wrong’/stigmatising messages being sent out by the media.” – – Tallulah Self 

“I think by sharing our own stories and encouraging other people to not only talk but to also ask questions; to let people (who have no eating disorder experience) know that it’s okay if they lack understanding and it’s okay to ask questions to increase their knowledge/understanding.” – Liv Goodwill

“I think running workshops in schools and workplaces would be a good idea to create awareness.” – Becca

“Although I feel education in schools is important, I think it would also help for there to be more education among the older generation. In general, I think the stigma surrounding eating disorders was more of a problem in previous years, and I therefore feel there is a lack of awareness and understanding among the older generation. Educating them would help them to not only educate the younger generation, but also to have more of an awareness that people their age may be suffering from an eating disorder. I also feel GP’s and other professionals should have specific training in eating disorders, or at least there should be a member of staff at each GP surgery who is specially trained, and to whom eating disorder patients are referred.” – Rosie Evans 

“One great thing to do is support organisations such as Beat, the eating disorders charity, so that they have a stronger voice when communicating with health professionals, politicians and the media. That’s why I’m fundraising for Beat with My Sock It Tour Of London. We can add our voices to these organisations too by telling others about their work on social media. Another thing to do is to challenge stereotypes about eating disorders and be more vocal about our struggles. After ten years of silence about my anorexia, I’m now very vocal about it through my blog, fundraising and social media activity. However, there are other important ways to contribute too, such as writing formal complaints when we receive poor treatment from health practitioners, and by writing to newspapers and magazines when they produce content we feel is damaging or triggering.”- Hannah Bird 

“Educating at a young age is key. Also focusing on all different types of eating disorders.” –Abbie 

“My diabetes nurse was an incredible support. She was my nurse as a child, before she moved to the adult team. I eventually moved back to her when i was 18, but it was during this intervening period that my mental health problems really started. She literally picked up the pieces when i transferred from paediatrics. While i was at the cliff edge between CAMHS and adult mental health services, she saw me weekly and acted like a therapist, For so many years, she has stood by me and gone beyond the call of duty to be there, even just as a listener. i often feel how hard it must be for her too. Although obviously it’s a professional relationship between patient and nurse, she has known me since I was 7 and also knows how hard things were when she wasn’t there. I will be forever grateful to her; she’s an example for all other specialist nurses to follow.” – Sophie Harrison, Bumble and Be

I hope this post has given you an idea of the importance of eating disorder awareness and how we can achieve greater awareness. In tomorrows post we will be looking at support.

Thank you to each of the wonderful people who contributed and shared their experiences,

Nicole

If you need support or advice on eating disorders please visit B-eat.

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