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Understanding Individual Needs

Understanding Individual Needs

Service users share how they relate to their own personal experiences of disordered eating.

EDAW 2023

For Eating Disorders Awareness Week, we are centring the voices of people in East London who have experienced disordered eating. Often, public awareness of eating disorders is mired in outdated stereotypes. To help challenge this, we asked service users about what they would most want people to know about who they are. A common theme that came up was the importance of understanding individual needs in treatment and recovery. The quotes below illustrate how certain individuals relate to their own personal experiences of disordered eating and we are incredibly grateful to everyone who has shared. However, please note that they are not intended to provide a set ‘truth’ about what it is like to have an eating disorder. People who are struggling may relate to some, none, or all the below – all experiences are valid and should be taken seriously. If you are experiencing disordered eating, please be aware that the below content may be challenging for you, and we encourage you to read (or not read) with care.

In eating disorder treatment, feeling understood as a ‘whole person’ with individual needs can have a powerful and positive impact on recovery

“[During the] second round of therapy… I feel like she did understand me more… as much more of a rounded, whole person, which I think was what I needed at the time, because the form that my eating disorder was taking was a bit more nuanced. It was a bit more insidious and needed different therapy, more nuanced therapy. And for somebody to really understand how it fitted into my life as much more of a whole thing. I can relate to the experience of a therapist not quite understanding, although I do feel really lucky with my experience.”  

“Feeling understood [in treatment] can be such an important place of change… when you feel that services really get who you are as a person rather than as a list of symptoms, or a list of what they think the symptoms should be, based on some book from decades ago or whatever.”

However, when the advice given in treatment is too ‘rigid’, this can lead to people feeling like their personal experiences are ‘wrong’ and have a negative impact on recovery

“Some of the food advice felt absurd to me, for example about what constitutes a ‘portion’. I found it really triggering and I lost weight. I feel he didn’t comprehend the idea that if I did a food diary, it would probably come back quite scruffy because I’d have been carrying it round for a week. I felt so misunderstood, but then I thought perhaps he does understand me and I’m the problem.” 

“I went into my second treatment so motivated. I had stopped step counting and written a list of things I was working on – things that have been going well, things I need help with, and things where I’m unclear if they’re even a problem… I was encouraged to go back to measuring how far I could walk so I could report it and reduce it.”

Sometimes we can feel resistance or denial...

“I would say it's partly down to me as well because I've been very resistant. Just how many times I keep hearing the same thing and I just don't want to hear it or I just block it off. But I haven’t had the best experiences with professionals bringing it up.”

Boxed in, photograph by Lottie Bolster, expert by experience

Boxed in 2

… but having our individual needs understood is an important part of overcoming this 

“So, at the mental health centre that I’ve visited, last year I had to go there for a blood test and stuff like that, and I just found it very disrespectful how he just blurted out how I was underweight and ‘you need to eat these things’. And in my head, I was thinking, well you haven’t even taken the time to ask what I can eat, it felt like he was making assumption after assumption. And I thought, if you had read my notes or even asked me you would realise that I can’t eat things like gluten and dairy, which is quite a lot to be taking out of your diet. [It felt like] a random judgement which wasn’t based on anything.” 

There is a need for understanding outside of services

“When people are giving advice for physical symptoms without taking the time to understand your personal experience, or some of the mental effects that get in the way of dealing with them... it’s like seeing they’re seeing the physical and mental effects as separate. I think it is so commonly not properly understood among medical professionals and I think it can make us feel like very powerless when we're faced with that.” 

Collage by Katharine Lazenby, made whilst an inpatient receiving treatment for anorexia

Collage

Some people will have more than one mental health diagnoses. However, it can feel like eating disorders are seen as completely separate from the rest of our experiences

“In the perinatal mental health service, I feel like the odd one out, like I’m not at home in either community.” 

“In eating disorder treatment, I found if I spoke about anything to do with my husband and daughter that was considered to be off topic. And no one could advise me on stuff like breastfeeding. It just feels like - I’m not a teenager and I have dependents, but people can’t understand that.” 

Parents can experience eating disorders too – and it’s important that treatment takes into account the needs of service users who also have caring responsibilities

“I was instructed to do things which do not fit with having a young child, with no flexibility. For example, I tried to explain that I can't necessarily write things down during/immediately after a meal as I am breastfeeding/weaning my daughter and have to time things around her and attend to her needs. I was just told that I have to do it anyway.”  

“I was told to point blank not walk on some days. But there was no help to know what to do with a one-year-old, not able to leave the house, and with my husband working from home in the same room.”

 

A note from ELFT

At East London Foundation Trust, we have been working with Experts by Experience to design a new Community Disordered Eating Service that meets all kinds of needs. We understand that eating disorders and disordered eating don’t have a ‘look’ and often do not fit traditional stereotypes - our aim is to connect everyone with the support they need. If you are struggling with disordered eating and live in the boroughs of Newham, Tower Hamlets, or City & Hackney, you can ask your GP to refer you to our service. You can also refer yourself via our website at the Community Disordered Eating Team.

Referral Form >>

Further information about eating disorder support can be found on the Beat website >>