What Helps – Support for Eating Disorders

What this project aims to do is find out what people living with eating disorders find helpful in terms of treatment and support from health services, therapy, family and friends.

The research on eating disorder support tends to be based on clinical measurements, external, and often visible and easily measurable symptoms, and not on how people themselves feel about the support they have received and the impact it has had on their lives. This project aims to focus exclusively on the experience of those living with, recovering from and recovered from eating disorders, specifically on how they experienced treatment and support and what they found to be most helpful.

To gather these experiences, a survey has been created and can be found here. It is open to anyone who has something to say about the support and treatment they have experienced relating to their eating disorder. Not all questions have to be answered, and it is an anonymous survey. Information that might identify the person answering the survey, services, professionals, family members or friends will be removed or changed. While we cannot guarantee that your experiences won’t be recognised as yours by someone involved, we will be as careful as we can to prevent this.

The reason for the decision to keep everything anonymous is to ensure people feel able to be honest without fear of being treated less favourably by services in future, or hurting family members and friends feelings. Alongside this, people who have a mental illness still face discrimination in society, so it was felt anonymity was important. People who fill in the survey can leave their age and location as it will be useful to know what country people are from and where treatment is written about, whether it was a young people’s service or an adult service. People can also leave their email address to be kept up to date with the project, and so that additional information about their experiences could be gathered in future should that be helpful.

Experiences will be published here as they are collected and regular summary updates will also be posted.

The email address to get in touch with the project team is: whathelpseds@gmail.com

Thanks

Laura

#4

What treatment have you received that has been helpful and why?
One to one emotional and psychological support and dietetic input was helpful as I could express my thoughts and emotions. Someone with a listening ear makes you feel less worthless and gives you relief. This with dietetic support addresses both psychological and practical issues around the disorder. Also with a collaborative approach like this to treatment there are clearer goals and action plans. This makes recovery feel safer and less chaotic.

What has been unhelpful in treatment and why?
Nurses in hospital inpatient units talking about diets, and eating diet foods in front of patients as it contradicts everything we are being told. They say it’s okay to eat this, yet they choose a diet option which they claimed to be unhelpful earlier. They need to help create a positive and consistent environment with clear boundaries.

There is also too much emphasis on numbers in terms of calories and weight- rather than psychological wellbeing. Judging someone’s recovery by their weight gain is simply stupid but is done A LOT. There should be less emphasis on weight, more on the mind! There should be less focus on calories too- I wished I was taught how to eat a balanced diet rather than nutritional treatment being focussed on daily calorie intake. Numbers are fantastic for the eating disorder- it loves them so the illness grows in intensity.

There is not enough preparation for independent living and self-management after hospital and there is not enough support for people in the community who might not be so physically unwell or low weight but who still struggle, and need just as much, if not more, support than patients in hospital care. There has to be as much input as possible for managing at home- how to cook, live, start socialising again, etc. as without this support you are set up for failure – relapse.

It is also unhelpful when practitioners have no active listening skills as it makes you feel like you are a waste of time and lowers your own self-worth and hope of being understood.

What have friends and family done, or not done, that has been helpful and why?
My family learned to externalise the eating disorder and to not talk about calories with me. Externalising the eating disorder allows both me and my family to see what is illness and what is me. It’s the eating disorder that doesn’t want to eat, not me. So it helps you combat the illness by addressing the ‘illness’ behaviours. That is easier said than done but it’s been helpful for me. I find people not talking about calories helpful because talking about calories triggers my eating disorder thoughts.

My partner helps immensely simply by not putting any emphasis on my shape and related issues and his support increases my self-esteem and self-worth. My partner also helps me plan my menu and shop for food which is helpful because then I manage to eat a variety and challenge my disordered thoughts around food.

What have family and or friends done that has been unhelpful and why?
Talking about weight loss and comment on my shape, which triggers my eating disorder. I immediately feel not good enough.

#3

What treatment have you received that has been helpful and why?
I had a helpful NHS GP who referred me to the eating disorder service in the area, but unfortunately the support and treatment received from the eating disorder service was not good. Private therapy was even worse. The GP listened and tried to get me help straight away.

What has been unhelpful in treatment and why?
Staff attitudes within the eating disorder service, they were not willing to negotiate. The treatment was presented as either all or nothing, there was no compromising or working with me. They also broke my trust on occasions.

What have friends and family done, or not done, that has been helpful and why?
Family did not understand, which was not helpful.

What have family and or friends done that has been unhelpful and why?
They were too controlling and didn’t give me space, which made me feel like something else in my life was being controlled and so the eating disorder became worse.

#2

What treatment have you received that has been helpful and why?
CBT through the NHS eating disorder service in my area as it wasn’t just a case of weigh-ins and food plans, it actively challenged behaviours and taught me new ways to cope with emotions other than through restriction, bingeing or purging.

What has been unhelpful in treatment and why?
Being referred through general mental health in primary care as they haven’t had enough training in eating disorders and don’t understand them. Every session I’ve had with a general mental health worker has hindered more than it has helped.

What have friends and family done, or not done, that has been helpful and why?
They’ve just been there for me throughout the length of the disorder, treating me as they always have done. This kept my identity as me, not as the eating disorder, which reminded me that they are separate and that it was possible to lose one without the other.

What have family and or friends done that has been unhelpful and why?
They have tried to sneak extra calories in to food or trick me in to eating something. This put me under more pressure and destroyed my trust in them. It made me (and still makes me) very wary of anyone but me touching my food or even bringing it to me at the table.

#1

What treatment have you received that has been helpful and why?
Long term counselling (private treatment) was helpful because the counsellor focused more on me, and how I got unwell, and then how to be well rather than what I weighed, or how often I was harming myself.

What has been unhelpful in treatment and why?
It has been unhelpful when the focus has been on weight, and medical based treatment – treatment that was not individualised. It didn’t take into account my co-morbid issues and it made me feel like an inconvenience.

What have friends and family done, or not done, that has been helpful and why?
Friends and family being open, letting me know I am important and taking time out for me has been helpful as it has made me feel validated.

What have family and or friends done that has been unhelpful and why?
It was unhelpful when they commented on my weight, and when they assumed I was better as I then felt that I couldn’t be honest with them on bad days.

What is the project asking?

These are the survey questions. People can answer as many or as few of them as they like. Answers will be anonymised. If you would rather you can post answers as a comment on this post. Your comment won’t appear – the comment containing your answers will be processed by the team and posted the same as those from the survey.

1. What treatment have you received that has been helpful?(this could be NHS, third sector or private treatment)
2. Why was this helpful?
3. What have friends and family done, or not done, that has been helpful?
4. Why was this helpful?
5. What has been unhelpful in treatment?
6. Why was this unhelpful?
7. What have family and or friends done that has been unhelpful?
8. Why was this unhelpful?
9. If you have any other comments, please write them here
10. Country
11. Age
12. If we can contact you to ask more about your answers, please leave your email address

The aim is to give people the opportunity to provide the information and details that they want to share, we want everyone to be able to use their own words and reflections and not be constrained by limiting questions.

The responses will be posted on this website as individual posts, and the themes that arise will be noted for regular summary posts. That way, people can read the detail of individuals experiences when they have time, and people can refer to the summaries where they are limited. The summaries will hopefully be used to draw people in to the website and to encourage them to read the detail of people’s responses.