This week is Eating Disorder Awareness Week (EDAW). The theme of this year’s EDAW is campaigning for all UK medical schools and foundation programmes to introduce proper training on eating disorders.
Eating Disorders account for around 9% of the total number of people with mental health conditions in the UK (Beat 2022). The 2019 Health Survey for England found that 16% of adults aged over 16 screened positive for a possible Eating Disorder.
Essex Partnership University NHS Foundation Trust’s (EPUT) Eating Disorders Service is a specialist service designed to assess and treat moderate to severe eating disorders. It primarily helps people who are suffering with Anorexia Nervosa and Bulimia Nervosa and variations of these eating disorders.
The team offer intensive day treatment services and specialist assessment, evidence based psychological therapies and therapy groups. It also offers Eating Disorders Intensive Community Treatment, and FREED (First Response Early intervention in Eating Disorders), a pathway which ensures those under 26, with a first presentation of an eating disorder which has been present for less than three years, will be contacted within 48 hours of referral, assessed within two weeks and will have started treatment within four weeks.
To mark EDAW, here are a few stories of some of the patients who have used EPUT’s Eating Disorders Service. They discuss their experiences of going through treatment, and talk openly about their condition and hopes for the future.
Faye’s story
To say the past year has been unpredictable and scary would be a huge understatement. I’m currently a sixth form student with a passion for being creative. I’ve grown up in different parts of Essex, and part of me wants to learn another language and then go off and teach English in another country. Yet what made the last year such a journey for me is the fact that I’ve been battling anorexia. While my mental health and issues with food had been somewhat noticeable beforehand, recently they have definitely taken a turn for the worst.
Recovery has not been easy, but the journey has definitely been worth it. When I first began my recovery journey with The Emotional Wellbeing and Mental Health Service (EWMHS) at EPUT, I was certainly not in the right headspace. My care coordinator did all she could for me, including getting a Home Treatment Team involved, but it felt as though anorexia had one huge grip on me and I just couldn’t see anything outside of it, and I almost didn’t want to. After a short general hospital admission, it was clear almost immediately that being somewhere where I had ‘control’ wasn’t good for me. That then led to a stay in a residential hospital.
My residential stay was quite uncomfortable. Being surrounded by people all struggling similarly to you can sometimes feel like a huge competition, which was not at all pleasant. However, having round-the-clock support around you with trained professionals and such a supportive environment was very good for me, and I made plenty of lifelong friends.
Upon my discharge, I felt so unsettled. Becoming an adult left so many things uncertain. I was moving into adult services, was going to have to return to sixth form in a different year group and I had to try to balance recovery, all at once.
While it has been hard trying to fight for recovery and study all at once, I’ve found that the work can take your mind off things very easily. Just like everything in recovery, it’s always the first step that’s scariest, the next just follow on. If I’m ever having a really hard day, I have to remind myself that it’s okay to have a break and focus on the really important thing: recovery.
The adult’s eating disorder service at EPUT has been so good for me. My nervousness was settled quickly by how quickly and efficiently they got me involved – in groups surrounding relationships with food and emotional regulation, weekly (now fortnightly for me) monitoring clinics, talks with my assigned nurse and dietician; so many things that have been helpful.
It has practically never interfered with my timetable at school, as the service adapt their times and appointments to where you’ll be able to fit in.
Alongside this, the fact that these groups are currently online really takes the pressure off a face to face meeting. If you’re feeling uncomfortable it’s easy enough to just stay muted and there are no worries about travel to and from anywhere. I’ll be starting a Maudsley Model of Anorexia Nervosa Treatment in Adults (MANTRA) group soon too, to do some really in depth internal work around anorexia.
All of the staff make me feel heard and understood – the dietician is lovely and recommends some incredible things; Biscoff ice cream was a massive hit. My nurse is always so understanding, kind and non-judgemental and my support worker is so considerate, never pushing me to talk about things that are too uncomfortable.
If anyone is as scared as I was about joining this service, please don’t be. Choosing recovery was the best thing I ever could have done and it’s incredible having all these people rooting for you, understanding you and supporting you along the way.
I’ve only been with the service for three months and they’ve already done so much for me. You don’t have to know your weight unless you ask, they will never comment rudely on anything and will always be just a text message away. I owe so much to them all in boosting my recovery confidence.
Looking back on who I was this time last year is shocking for me. The scared me who thought she couldn’t do it has come out the other side and is fighting how she never knew she could. I truly believe anyone can recover from anorexia, binge eating disorder, bulimia, Eating Disorder Not Otherwise Specified (EDNOS) and any others whether on their own or with the help of a service. You will always find yourself eventually.
Annette’s story
Although I now understand there is no “typical” candidate for an eating disorder, I fell into the narrative that it mostly afflicted teenagers and young women pulled in too deep by the diet culture and body-shaming perpetuated by the media. So when I was diagnosed with anorexia at 45, it was a shock that this “thing” was happening to me.
Until this age, I’d always been a healthy weight and knew that my body size and shape was just fine. As a mother to five amazing children that I loved parenting and supporting through their own journeys into adult life, I couldn’t understand why anorexia had hit me now. But anorexia does not function through logic and looking back at my life, I now see that the seeds for it to grow and flourish were there right from when I was a child. It was only when a series of stressful events and a mental health crisis occurred in my life that it was activated into full-on mode.
I am now 55 and for the last 10 years have struggled on and off with anorexia. When I say “off”, it’s never really been off. I’ve had periods in between when I’ve restored my weight and physical health, and even let go of the obsessive behaviours that are part of an eating disorder, but the anorexic voice still whispered to me, biding its time until the next stressful event occurred and I would start paying attention to it again.
At the end of 2020 I began listening to it again and this time it was shouting at me louder than ever. So in April 2021, I entered EPUT’s eating disorder services for a third time, at my lowest ever adult weight, exhausted physically and mentally from dragging the ball and chain of anorexia around with me. Although I was terrified of gaining weight and letting go of the seductive and soothing side of anorexia, I needed to be given permission to do this by the Eating Disorders Team. That way I didn’t need to feel I’d given up the fight to lose weight because I was I too weak-willed, or greedy, but because someone was in my corner, caring enough to help me fight and helping me see the good side of recovery again.
As I get close to another year in treatment, I can see this is exactly what’s been happening to me. As someone who finds it very difficult to show my vulnerabilities to family and friends, I was alone with my eating disorder, unable to reach out to and talk about the things I needed to in order to start a sustainable recovery. Talking to EPUT in an open and honest way without fear of judgement or hurting anyone close to me, has helped me gain valuable insight into what sustains my anorexia and what can help me let go of it for good.
The anorexic voice loses some of its power when it’s out in the open. Getting used to talking candidly has also led me to having conversations with my family that I never thought possible before. Although I still have some way to go to recover fully, I have reached the point where I can look back, reflect and see that I am indeed making progress. Not just on the scales, but in my outlook and desire to be part of a meaningful life again. Some days and situations can still be very tough for me, but my mood is lifting, my anger and sadness reducing and I am feeling proud of the achievements I’m making. “What’s the point?” is no longer my default position – the one I entered recovery with.
The EPUT Eating Disorders Team have made it so easy to engage in treatment. I have gone from initial resistance and cynicism to feeling confident and happy to engage. It no longer feels like an effort or something must force myself to do.
The Maudsley Model of Anorexia Nervosa Treatment in Adults (MANTRA) model of treatment aims to address the cognitive, emotional, relational and biological factors which tend to maintain anorexia by working out what keeps people stuck in their anorexia, and gradually helping them to find alternative and more adaptive ways of coping. These group sessions have let me see what’s on the other side of recovery and acknowledge the positive things about myself that are already there, waiting to be grown further. This was gained just from the first module, and I am excited to see where the other modules will take me in my recovery journey.
I’ve learnt enough from my battle with anorexia that recovery is not quantifiable by the number on the scales. For me the moment I realised I’d reached a key point in my progress came when at an unrelated event I was asked to write down a message in a heart for Valentine’s Day. My go-to thought was to write something characteristically dark and dismissive. But instead I wrote:
“There are some days when I really love life”.
I can’t say with certainty that my recovery will be full or sustained, but I focus on the thought that all we have for sure is the here and now, and I’ll take that.
Caroline’s story
I am 24 years old and have been under the care of the South Essex Eating Disorder Team since mid-2020. Unfortunately, it’s not my first rodeo with a mental health team but I’m hopeful it’ll be one of the last.
Through no fault of my parents, I had quite a dysfunctional upbringing. My dad was an alcoholic and my mum struggled to be a parent. We moved around a lot; starting out in Essex where my two half-siblings from my mum’s first marriage lived; then moving north to try and ease my dad’s stresses and hopefully reduce his alcohol intake; then to Scotland in a last ditch attempt to stop my Dad’s increasing deterioration; then back to Essex following my parent’s divorce.
It was on my return to Essex, at the age of 11, living 400 miles away from my Dad, when the years of upheaval, unidentified abuse and neglect took its toll and I began to struggle with my own mental health. I was first diagnosed with depression and anxiety at the age of 12 which quickly developed into anorexia. I declined pretty quickly and was hospitalised in 2012 at a specialist eating disorder unit.
After discharge I spent the proceeding years continuing to struggle quietly, undergoing therapy with various teams for everything from depression, to PTSD, to eating disorders but I managed to maintain a level of life with it. I attended college, where I met my now husband and qualified as an accountant, becoming one of my company’s youngest ever finance managers.
Whilst outwardly life was going pretty well, I still had my demons and I sought treatment with the mental health team at Basildon Hospital. It was then that I was diagnosed with Emotionally Unstable Personality Disorder (EUPD) and years of varying symptoms finally made sense.
I started treatment in March 2019 for my EUPD but unfortunately lost my Dad to his own demons on the 20 June 2019, at 16:23pm. It’s strange how those moments stick with you. Over the following months as I explored my condition, I became increasingly aware of pain and neglect I’d suffocated for years previously and when the pandemic hit and I was trapped with my biggest living trigger, I relapsed with my anorexia.
I finally sought support from EPUT, by which time I had already lost a significant amount of weight and was struggling to keep my head above water, work was harder to manage and I couldn’t engage with my EUPD therapy properly.
EPUT quickly arranged some home support for me in the form of the Maudsley Model of Anorexia Nervosa Treatment in Adults (MANTRA) group and one-to-one sessions. Unfortunately, my weight loss and mental stability declined rapidly and by the beginning of August we were at a critical stage of life and death.
I was given a choice: either put some weight on and accept all the treatment offered at home to get better, or be admitted into hospital. My husband has always been my biggest support, and I couldn’t bear the thought of leaving him or taking time off work to do the hospital route again. So I dug in, took the weekly sessions with EPUT and started to put the weight on.
Their knowledge was absolutely invaluable to me. I found weekly check ins where we discussed my nutrition, weight, health markers so useful to help me grow my meal plan in a way that I could manage but still challenged me.
The Eating Disorder Team gave me mini targets each week to address behaviours or fear foods and would also help me update my meal plan so I would consistently eat and gain the weight I needed. The team also really helped drive my GP surgery to undertake the relevant blood tests and check-ups that needed to be done to allow me to remain in the community.
The team at EPUT understand me so well and used techniques that worked for me. I am a mathematician at heart and they use data, science and experiments to help me relearn relationships with food and exercise and my body. They support me to challenge myself and to lean on the people I can rely on to improve my life and heal. I also think that the regularity of communication has always been tailored to me and my needs (more when I need it, less when I’m doing okay) and it actually allows me to continue to work and live a normal life alongside.
Being able to do video calls makes it so much easier to fit in than trying to get to a clinic of some kind, and I don’t feel like I lose any of the face to face interaction. The Eating Disorder Team at EPUT spent so long getting to know me and my goals, as well as letting me get to resolutions myself and direct my own recovery – that’s so important to me because it encourages me to take an active role in my recovery and actively strive for my goals rather than relying on other people.
This is the first time I have actually felt like my recovery was a choice. It’s the first time I’ve truly engaged with a program and recovery. It’s taken over ten years to get here but I have finally chosen life, chosen recovery and that’s not by chance. It’s thanks to EPUT and their wonderful team.
I’m going to leave you with this. Very recently I weighed in and gained weight. After that I voluntarily chose a meal plan increase, more calories, because I finally recognise that a full life comes from a healthy body and mind, and that needs true nourishment. It means challenging your fears, facing them head on, and sometimes eating a slice of cake. I never felt like I deserved life, I never felt like I wanted life, I thought food and self-care was a luxury. Sometimes I still feel like that but more often now I see past that. My treatment has given me hope to dream of. A million thank yous and more for this.