There are as many reasons as there are people, everyone is different, and the support can be scarce. That’s why eating disorders are so difficult to spot, often mistaken for a phase, and even more difficult to fight. But what goes on in the mind of somebody that’s affected by an ED, and how to understand them? Young Ambassadors of Beat share the eating disorder stories to raise awareness of this fickle illness.
Eating disorders have the highest mortality rates of all mental illnesses. National Eating Disorder Association found that mortality rates were 4.0% for anorexia nervosa, 3.9% for bulimia nervosa, and 5.2% for eating disorder not otherwise specified. But not only medical complications can end the life of ED sufferers prematurely – the suicide rates among them were also alarmingly high.
However, with careful help and care, the illness can be overcome. Research shows that around 46% of anorexia patients recover fully, 33% show the signs of improvement and 20% remain chronically ill. In the case of bulimia, it becomes 45% to 27% and 23% respectively.
The chances are, you know somebody who’s been affected by an eating disorder. However, everyone is different, so it might be difficult to spot the symptoms early on. What goes on in the head of somebody who struggles with the illness classified as an ED? How to help them without hurting them?
Here are a couple of stories of those who fought an eating disorder, kindly shared by the ambassadors of Beat – a charity dedicated to prevention, diagnosis and treatment of eating disorders.
A fully loaded gun
“Genes load the gun, and environment pulls the trigger,” Becky quotes Cynthia M. Bulik, and goes on to explain what it means for ED sufferers. “I think this quote is useful in explaining eating disorders to people. Those who develop anorexia will often have a genetic predisposition. They will be wired in a certain way and if the right mix of environmental factors come into play, anorexia begins.”
And it’s difficult to explain to your environment, sometimes even to your loved ones, that it isn’t a choice. When it finds a potent ground, it can develop extremely quickly.
Genes load the gun, and environment pulls the trigger
“It isn’t something that people decide to have,” she says. “Restoration of full nutrition can repair brain structure. With time, patience, support and continued nutrition, full recovery is totally possible.”
Then, she tells me her own story.
“I have had an OCD from the age of three. I’ve always been incredibly anxious and was known as ‘the little worrier’ throughout primary school. I’ve also always wanted to get things ‘right’. Things needed to be perfect and anything less than perfection made me feel as if I’d failed,” she explains. “I had amazingly supportive parents that put health and happiness above everything but the pressure of school and the teachers’ expectations scared me; what if I failed? I equated high grades with being liked and thought highly of; I just wanted to be ‘good’. At 13, I developed a vomit phobia. I’d always been fearful, but I became fearful on a whole other level. I began to eat less because I thought that this would lower the risks of me being sick… The change to high school, approaching GCSEs and other life events all seemed to work against each other. I felt like I was falling with nothing to grab onto. It was all flashing past so quickly, I couldn’t slow it down, change direction or stop it. It was just happening and I hated it. Then, I started to do some sport. I’d always liked sport but I wasn’t keen on the team games – if someone was running at me with a hockey stick, I was running away from them and that never went down very well!”
Becky ties it back to her own state of mind – the circumstances were there; the illness found a mind to attach itself to.
“Genetically I was predisposed to developing anorexia; my gun was fully loaded. There were many environmental factors and the food restriction due to the phobia. My trigger was pulled. The environmental triggers will vary from person to person. For some, it can be as simple as going on a little diet to lose a couple of pounds… I didn’t think to myself, ‘Oh, today I’m going to become anorexic’. I feared the whole world, I felt like I had lost grip on everything around me, and over time I found that restricting my intake actually reduced my anxiety and made it easier for me to ‘be’ a part of the world,” she describes her feelings.
I didn’t think to myself, ‘Oh, today I’m going to become anorexic’. I feared the whole world, I felt like I had lost grip on everything around me
The comparison game
Lucy, a girl who’s almost ten years younger than Becky, faced a slightly different experience – nonetheless, also enforced by her circumstances.
“When I was ten years old all my friends were very, very thin as I’d began to fill out earlier than them. I often felt overweight and embarrassed whilst being around my friends and I became very uncomfortable with my body. This led me to start purging [nb. controlling the calorie intake with an eating and vomiting cycle] after meals to lose weight, leading to many hospital visits and taking a year from primary school,” she tells me. “When I was thirteen, my negative feelings towards my body became very prominent again. I began to control my calories rather than purge . I lost a significant amount of weight and was admitted to inpatient care. A year after, my eating disorder hit again at its worst, and I fell extremely ill with anorexia nervosa.”
For Rebecca, the illness started at school. Although it initially stemmed from an act of good will, she never had a reason that would match a textbook description.
“It began when I was 12 and my friend’s parents had stopped giving her lunch money. I had a £1.35 lunch allowance and gave her £1 each day and spent the remaining 35p on an apple and a carton of orange juice,” she reminisces. “It started as an act of generosity to my friend but I found I like the feeling of being hungry so started to skip dinner too, saying I had eaten a big lunch at school. I had no idea what calories or carbs were, and knew little about exercise in relation to weight loss, but started running around my room and doing star jumps and other various amateur exercises for hours. I’ve never discovered any reason.”
The world of restrictions
How can you tell that somebody’s affected by an eating disorder? Everyone is different, but the rapid weight loss is one of the most prominent warning signs.
“I had constant dark circles under my eyes and soft, downy hair on my skin. There was no trigger, it just felt constant. I still don’t feel like I’ve ever had a trigger, I just work hard to keep the thoughts at bay,” explains Rebecca.
“At the beginning, it was slight food restriction and an increase in exercise which caused weight loss. As time went by that increased and my head was full of anorexia’s demands, along with an increase in OCD thoughts and behaviours. I was 13 when I first developed anorexia, not that I was aware of that at the time. Over the last 13 years the behaviours from an outsider’s point of view have changed, but the insidious voice of anorexia is always the same,” adds Becky.
If someone suddenly increases their physical activity and cuts calories near to nothing, it might also be a warning sign. Lucy tells me that she’s become very solitary, too, cutting off everyone who could have supported her.
“I exercised a lot, each night I would leave the house and jog do yoga for several hours. I also developed insomnia and would spend sleepless nights walking around in a circle with a pedometer to see how many calories I could burn,” she describes the symptoms. “I also became very withdrawn, rarely spoke to anybody, never left the house and lost all contact with friends. I became extremely depressed too and would cry a lot, and cut off family members who would have been helpful.”
I felt this kind of happiness when I lost weight, like I had achieved something and was closer to reaching the weight I thought would bring me true happiness.
Closer to the magical number
People who suffer from eating disorders hide their problems for as long as they can – and their family and friends are often not aware of the dramatic battle that goes on in their minds. But you can hide it for only so long.
“I don’t remember much of how people reacted, I kept it as hidden as I could. I mostly remember concern from people. For me though, losing weight became an obsession, it became increasingly important I would begin to punish myself for not losing weight and spiralled even further. I felt this kind of happiness when I lost weight, like I had achieved something and was closer to reaching the weight I thought would bring me true happiness. I couldn’t understand why someone was telling me it wasn’t real happiness I felt, it became a feeling I strove for each day,” Danielle confesses.
“I’ve always been quite petite, so when I started to lose weight people were quick to comment, often with the most inappropriate and ignorant things… ‘You look like you want a good meal inside of ‘yer! A good beefburger’d do ‘yer good.’ Before I had ‘accepted’ that I had anorexia, I was very secretive and tried to keep under the radar, so to speak. Obviously, looking back now, I can see that I was never going to remain under the radar when realistically I had a massive flashing light above my head screaming, ‘She looks ill!’, but I didn’t see that because I thought I was fine and I just wanted people to leave me alone and stop interfering. Anorexia hated them,” Becky admits. “I’ve always needed reassurance and praise, just like any other child, but I’ve needed it past the point of what is considered ‘normal’ and even after someone has said that I have done something well fifty thousand times, chances are I still won’t be able to believe them. It goes back to that wanting to be a ‘good girl’; to be perfect. Everything associated with anorexia felt different because I didn’t need approval or acceptance or encouragement from anyone else; it came from anorexia.”
Losing weight made me feel in control and powerful; something I rarely felt and like an alcoholic or a drug user I was addicted
“At first my family did not mention my weight loss. As it became more prominent and frightening, my family began to express their concerns,” Lucy says. “I didn’t listen to them as losing weight made me feel in control and powerful; something I rarely felt and like an alcoholic or a drug user I was addicted.”
Caged by perception
For a mind that struggles under the weight of an eating disorder, it’s easy to get triggered. On the internet, on Tumblr and Instagram, the girls share thinspiration – pictures of extremely thin girls, or “motivational” quotes. Under the symbolism of butterflies hides a deadly inspiration to push for a lower number on the scale. But in fact, you don’t even have to actively look for those.
“I did compare myself to others, especially while I was an inpatient. I would often aspire to have legs like someone I saw on the street, even though looking back I was significantly thinner than others I aspired to be like,” Lucy reveals. “I was often triggered by extremely minor things. I often wore baggy clothes so others wouldn’t see how ‘disgusting’ I pictured my body to be. I picked out flaws which were not existent and I bullied myself horribly. I despised my body.”
[Anorexia] reminds me of Alice in Wonderland; what’s up is down and down is up; nothing makes sense and words are twisted, well-meaning comments come with barbs and love can be coated with guilt and shame
“Whilst part of me could see that I was losing weight, I was increasingly seeing myself as overweight. I thought that anyone who was telling me otherwise was lying to me, either to be nice or because they didn’t know how to tell me. I simply couldn’t accept how my body really looked,” Danielle shares.
“And often, people are trying to say the ‘right’ thing, be encouraging and show their support. Sometimes it’s best not to comment, or if you do make it very specific, ‘Your makeup is lovely today’ or ‘You look happy today’… Anorexia’s interpretation is like another language. It’s so incredibly difficult for the person battling it and those trying to support that person,” Becky describes how easy it can be for an ED sufferer to misinterpret a compliment. “It reminds me of Alice in Wonderland; what’s up is down and down is up; nothing makes sense and words are twisted, well-meaning comments come with barbs and love can be coated with guilt and shame. This isn’t reality and isn’t what is meant, but it’s the reality of anorexia and the person battling with it.”
The final straw
The stories of getting help also differ. Oftentimes, the person affected by an ED can’t really understand that there is a problem – and sometimes, they instinctively feel that something is not right.
“I think I knew from quite early on that there might be something wrong. When I realised that, I understood I’d have to tell someone. I had a good relationship with a youth worker who already knew some of what was going on, so I opened up to her fully,” Danielle tells me. “She continued to support me through my ED, but she told my mum what was going on. This was a difficult time for me; I had difficult family relationships and I didn’t like people knowing what I was doing. My parents didn’t really understand, especially at first and this caused a lot of problems at home. My mum also forced me to get professional help which made things even worse between me and her.”
For Lucy, the breaking point became the moment when the gastroenterologist told her that if she didn’t gain weight, she would die.
“I realised something was wrong when I lost six kilogrammes over the course of four weeks, which my doctor pointed out to me was extremely dangerous. Others told me I needed to see dieticians or even return to the inpatient unit yet I refused. I eventually wound up in the A&E for several weeks as my health took a turn for the worse and my rapid weight loss caused me to develop an extremely rare life-threatening illness,” she recalls.
But the realisation isn’t enough. There are plenty of challenges that those affected by eating disorder face – both internal and external. Starting from the limited access to professional help to difficulties in regaining the balance, the escape route from the illness are long and winding.
“The biggest challenge was accepting the fact that I needed help. I’ve always been a very proud and independent person and admitting that I needed help with something was very difficult. Talking about it with anyone was also difficult. It’s not something I did very much, even with the psychiatrists and care co-ordinator,” says Rebecca. “I can now, however, talk openly and freely about it. I use my position as a Young Ambassador for Beat to promote the effective treatment of eating disorders.”
“Eating for the first time was extremely difficult. During my stay at A&E, I was being fed through a PICC Line and then through a nasogastric tube. When I left, I was supplied with Ensure Twocal. I felt very afraid to eat the first time; I did a few months later, and it was the most nerve-wracking experience of my recovery,” Lucy explains.
The biggest challenges are the ignorance that you face, the lack of services, the lack of funding, the outdated and wrong opinions that still circulate the medical field, the lack of understanding and the fact that many people seem to be ‘written off’ as chronic
Against the system
The outdated system and stereotypes engraved in people’s minds make the prevention, diagnosis and treatment more complicated, as Becky’s example shows.
“The biggest challenges are the ignorance that you face, the lack of services, the lack of funding, the outdated and wrong opinions that still circulate the medical field, the lack of understanding and the fact that many people seem to be ‘written off’ as chronic meaning that the belief of recovery is snatched away,” she points out. “The GPs we saw told my parents that I was going through a phase, not to make too bigger deal out of it, that lots of teenage girls do this, that forcing me to eat would be against my control and it would make me worse, that they needed to step back or else it’d be their fault for pushing me further under… Which is all tripe. My parents knew it was, but at the same time, the GP impounded their fears around making me worse or losing me. There was zero support for them, or for me. My parents didn’t just ‘leave me’, they sat at the table for hours until I ate something,” she says.
“I finally did get a referral to the adult mental health service at 16. I was assigned a lady who was a CBT nurse. I have also been under the observation of several psychiatrists, care coordinators, support workers, dieticians and a nurse. I straddled the Eating Disorder Service and the general mental health service for a while, but due to a change in funding, it became impossible. After lots of discussions, it was decided I’d stay in the general mental health service; a decision I regret so very much. (I’m currently under a psychiatrist and a care coordinator.) Changes to the service structure, cutbacks and loss of staff have made things feel very bleak and hopeless. Trying to fight anorexia is intolerably difficult but having to fight the system, too…?” she remarks.
To be continued
After the months of the battles they needed to face, do they have anything to share with those who struggle with an ED now? Danielle says that it’s important to breathe new life into the old passions to fight the illness.
Never give up hope – there is life beyond an ED, and when you believe that you can take steps to make it happen
“Try to remember other things that made you happy before your ED to invest in and give yourself another focus. EDs can consume you and it’s difficult to encourage your recovery if your whole life revolves around it. It’s important to try and have goals of things you will be able to do again when you improve,” she says. “Never give up hope – there is life beyond an ED. When you believe that, you can take steps to make it happen. Recovery can be incredibly tough. But it’s the most rewarding thing. Getting your life back to being yours is amazing.”
“Don’t think that no one cares, because I can guarantee someone does. The isolation makes you feel that you don’t need anyone but a part of you thinks it’s because they wouldn’t care if you told them. Open up to someone and decide on a course of action which seems manageable for the individual,” Rebecca encourages.
“Let family members and close friends in and accept what they are saying,” Lucy seconds her opinion. “They are not there to hurt you or upset you. They just want to help and as minor as it may seem, letting someone into your head can help you see things much more clearly.”
You are an amazing human being who is deserving of health, happiness, life, adventure and choice. An eating disorder stops these, it’ll tell you that you don’t deserve them, you mustn’t listen
“Some people will say incredibly unhelpful things but know that that doesn’t mean that they are right. It means you need to speak to someone else… Sometimes, it seems you have to speak to a hundred people to find that one person who will listen. That can be incredibly tiring and draining, but don’t give up because there are people out there that understand,” Becky adds. “I know people who have fully recovered. Some of them have fabulous careers, fantastic partners, beautiful children and all of them are happy and healthy. There is hope out there, and we must hold onto that. If you can’t, find someone to hold onto it for you until you can believe it again. You are an amazing human being who is deserving of health, happiness, life, adventure and choice. An eating disorder stops these. It’ll tell you that you don’t deserve them, you mustn’t listen. The eating disorder is wrong, it will always lie and it’ll never give you what it promises. Trust those around you, those that cheer for YOU and boo the eating disorder. They are the truth. You are the truth.”
Although it might seem difficult to get help, there are specialists that are there to listen and help you get better. Contact Beat, UK’s eating disorder charity, to get professional support.
Viewfinder is a series of documentaries which focus on burning issues to raise awareness about them by having a closer look at the experiences of those who know them first-hand.