What people affected by eating disorders want you to know

We asked people affected by eating disorders – either by experiencing it themselves, or through looking after a loved one – what three things would you like everyone to know about eating disorders . Some clear themes emerged around the common misunderstandings and lack of awareness surrounding eating disorders.

Those with experience of an eating disorder themselves

What they said

• “You don't need to be extremely thin to have eating disorder”
• “Looking fine does not equal feeling fine”
• “Saying to people who are struggling to “just eat” is not good advice”
• “It’s not about food – it’s control, self-doubt and a way of managing other struggles”
• “It was not my choice or fault”
• “Eating disorders are a serious illness; they are not a choice or 'just a phase'”
• “They are mental illnesses with physical side effects”
• “They are a serious illness with the highest mortality rate of any psychiatric condition”
• “They can affect anyone, regardless of background, ethnicity, sexual orientation, gender, wealth or age”
• “Recovery is possible (even if you don't feel like it is)”
• “That recovery looks different for everyone AND everyone is worthy of recovery”
• “Each individual with an eating disorder will experience it completely differently (it’s not a ‘one size fits all’ illness!)”
• “It impacts every area of my life”
• “No matter how slowly or seemingly gently it may creep in, it takes over your entire life. I just stopped caring about anything else”
• “Eating disorders are not about vanity or attention seeking”
• “They are very isolating and can make you feel like you’re not good enough to be around others”
• “People aren't aware of the impact and damage that off-hand comments about weight and food can cause”
• “Early intervention increases the chances of successful recovery”

What we heard

There were common themes from many respondents in terms of what they wanted people to know about eating disorders some of these address misunderstandings about eating disorders. This included that weight or appearance does not indicate severity, that eating disorders aren’t just about food but are serious complex mental health illnesses. It’s also clear that eating disorders impact every area of their lives, that they aren’t a choice and can happen to anyone regardless of their age, gender, sexuality, ethnicity and background. And there is no one size fits all when it comes to treatment and recovery. But there is hope - we also heard about the importance of early intervention, and that recovery is possible.

Those who’ve looked after a loved one with an eating disorder

What they said

• “Recovering from an eating disorder takes time and patience and it can’t be rushed, it takes as long as it takes”
• “An eating disorder affects the whole family and all their lives”
• “The eating disorder affects all parts of family life and makes even going to work difficult for the carer”
• “They didn’t choose it, it isn’t their fault.”
• “It’s normal to feel helpless, this is not your fault”
• “Reach out to support organisations like Beat as there will be others with similar experiences and it helps to talk”
• “Taking part in the Developing Dolphins training is invaluable in helping you to support your loved one with the eating disorder”
• “Keep being there for them, listen to them all the time ”
• “It's not easy supporting a loved one, be patient but also make sure you get time to recharge as well”
• “An eating disorder is a mental disorder - weight has nothing to do with it.”
• “You should not comment in anyone's shape, size or body”
• “It’s important to separate the illness from your loved one. Things they do or say is not them, it’s the illness.”
• “The obvious 'cure' is to just eat. It was not until I learned how complex and devasting this illness is that I could better support my daughter. I have Beat to thank for that, entirely”

What we heard 

Those supporting some with an eating disorder want you to know that eating disorders are not a choice, it’s not about “just eating”. They are serious mental health conditions that can affect the whole family. You can feel helpless but you are not alone - there is support out there.. There is always hope for recovery and it is possible for everyone.

Here are some top tips from our survey responses:

1. It takes time, understanding and patience – recovery cannot be rushed and isn’t linear.  Be patient, kind and non-judgemental both to your loved one and yourself.
2. Seek Support – reach out for help and support from organisations like Beat. Connect with others with similar experiences. You are not alone.
3. Educate yourself, listen and talk to your loved one and professionals this can make a big difference by helping you build strategies to support your loved one. Our website has lots of information about eating disorders to help with this.
4. Make time for yourself – it’s important to look after your own mental health and practice self-care so you can be the best support to your loved one
5. No blame – this is not your fault or their fault.

Remember that there is hope and recovery is possible. Our services are here for you when you need them.