In this guide for people struggling with disordered eating, adults from East London share a snapshot of how they have navigated the process of seeking support from professionals and loved ones. By sharing their stories, ‘experts by experience’ seek to challenge the ‘eating disorder stereotypes’ which can so often stop us from feeling we deserve help.

We also reflect on the many different meanings of ‘recovery’ and the ways in which people can make this feel relevant and realistic to their own life. In doing so, we hope to empower all those who may feel they are not deserving of support or recovery to believe otherwise – because there is no such thing as ‘not being sick enough’ to deserve a life without the distress of disordered eating.

The booklet has been designed and co-produced by members of the East London Disordered Eating Expert by Experience (EbE) Group. The EbE group is based within the adult Community Eating Disorder Service at East London NHS Foundation Trust (ELFT), where members use their personal lived experience of disordered eating to contribute to the design and development of the service. For further information or queries, please contact Sarah Mann, ELFT People Participation Lead for Disordered Eating sarah.mann27@nhs.net

Are you an adult with experience of disordered eating or an eating disorder? Have you accessed mental health services in East London?

‘Professional expertise’ is only one part of what makes a good mental health service. In our People Participation group, ‘experts-by-experience’ work with eating disorder professionals to help develop and improve the East London Community Eating Disorder Service. Our members take part in activities such as:

• attending focus groups and planning meetings to help inform best practice in disordered eating support
• co-delivering psychoeducation sessions for service users
• co-designing and co-delivering training on disordered eating to ELFT staff
• co-producing support resources and communications materials for the service
• participating in Eating Disorders Awareness Week campaigns
• sitting on interview panels to recruit new staff

As an expert-by-experience in disordered eating, you can be paid for your time via ELFT’s Reward and Recognition scheme. If you’re interested in finding out more, you can find further information here. You can also get in touch with our People Participation Lead for Disordered Eating using our contact form.

Lived experiences of eating disorders: what the textbooks don’t tell you

Eating Disorders Awareness Week (EDAW) webinar

Weds 28th Feb, 1:00pm-2:30pm

In this online session to mark EDAW 2024, Experts by Experience from East London Eating Disorder Service and Bedfordshire and Luton Eating Disorder Service will be discussing what it feels like to seek help and navigate the healthcare system as someone with an eating disorder. We’ll be looking beyond the myths and stereotypes to explore questions such as:

• What does the ‘eating disorder identity’ feel like?
• What does ‘recovery’ really mean to us, beyond clinical definitions?
• Who is served by eating disorder services – and how can we make them more accessible for everyone?

Beyond weight, shape and counting numbers, we want to explore who ‘eating disorder patients’ really are, what we need – and how NHS services can support us to build a meaningful life by expanding our definitions of recovery.

This session is open to anyone who wants to better understand how to support patients struggling with disordered eating across the healthcare system.

Click here to sign up to the webinar via MS Teams

The 4.5% of children and teenagers* labelled as “persistent picky eaters” could have an undiagnosed eating disorder, according to NHS experts.

Avoidant/Restrictive Food Intake Disorder (ARFID) is an eating disorder unlike Anorexia Nervosa or Bulimia because individuals are not concerned about their body image or trying to lose weight. There is currently no solid data for how many people in the UK have ARFID as it is very often conflated with “fussy” eating. However, in a systematic review** of 30 studies, the estimated prevalence of ARFID in child and adolescent samples ranged between 0.3% and 15.5%.

ARFID is characterised by a limited range of food intake by eating only “safe” foods and avoiding entire food types, leading to difficulty meeting nutritional and energy needs, weight loss and health problems. This can be for reasons including sensory sensitivity, fear of negative consequences from eating, and/or a low interest in eating.

With Eating Disorder Awareness Week currently underway, the NHS-backed psychoeducational website, Be Body Positive, is urging parents, carers and health professionals to find out more about ARFID, listen to people’s stories with empathy, to offer support and avoid judgement. Be Body Positive, which is in partnership with Barnardo’s, also encourages people who have concerns to seek support from their GP should they have any concerns about diet and nutrition.

NHS specialist eating disorder dietitian, Paola Falcoski, has developed self-guided modules on ARFID for Be Body Positive. These include evidence-based resources from Cognitive Behavioural Therapy (CBT) and Exposure Therapy, as well as resources for parents, carers, schools, and health professionals.

Paola said: "ARFID is a complex eating disorder that requires a multifaceted approach to treatment, but recovery is possible. People deserve the right support in navigating their journey towards recovery."

Tahlia David, who had eating difficulties since childhood, was finally diagnosed with ARFID when she was 20 years old. Tahlia's experience with ARFID began at a very young age, but like many others, she was initially dismissed as a “fussy” eater before eventually being misdiagnosed with Anorexia Nervosa as a teenager due to significant weight loss.

For Tahlia, the impact of ARFID extends far beyond the dinner table to emotional, psychological and physical symptoms which make day-to-day life difficult. Tahlia has an above-average sense of smell and taste; she finds certain textures fear-provoking; she can’t eat different foods if they are together on her plate and she has an intense fear of food poisoning which causes distress and nausea long after mealtimes. This has impacted on Tahila’s social life and, as she was misdiagnosed as a teenager, she missed out on vital treatment earlier, when her symptoms were less severe and her physical and mental health were less impacted.

Tahlia said: "Growing up, I felt misunderstood and isolated because of my eating habits. It wasn't until I was properly diagnosed at 20 that I understood why I struggled with eating. Knowing that ARFID exists has been a validating experience, connecting me with a community of people who share similar challenges."

Tahlia's story highlights the importance of ARFID awareness, particularly in educational and medical settings where early intervention can make a significant difference in treatment outcomes.

Tahila added: "Schools and GPs should be more aware of ARFID and other eating disorders that develop early. Words and attitudes matter.”

For further information and resources, connect with Be Body Positive on Instagram, TikTok (@bebodypositive_nhs), or X, previously Twitter (@BBP_NHS), or visit the official website www.bebodypositive.org.uk.

Follow Tahlia's journey @tahliapaiged on X and stay tuned for her upcoming blog on www.bebodypositive.org.uk