Caring for someone with an eating disorder

[Paperdaisy]

“Creating a safe space is so important in recovery; where you don’t talk about diets and exercise, where food isn’t labelled as good or bad, where you don’t talk about your own body insecurities.”- Bow 🦋

Talking about an eating disorder is difficult. Some people don’t know what to look out for and feel helpless. We have put together this post in collaboration with @Bow  who has lived experience of an ED, as well as through the resources provided online via the Butterfly Foundation to help support people with ED and their carers. @Bow Thank you for your invaluable input.

There are many reasons why people develop an eating disorder, and it is likely to involve a combination of psychological, sociocultural and genetic factors.  It is important to remember it is not a diet gone too far, it is a complex mental health condition. Background information as well as the explanations of different types of ED can be found here .

Some signs you may want to look out for 🦋

• Dieting or refusing particular food groups
• Continually thinking about calories, their body, weight or image
• Changes in eating habits- a focus on good/bad foods
• Anxiety around meal times- rigidity and ritualistic behaviours around food and eating
• More food than usual disappearing, which may be a sign of binge eating
• Replacing meals with fluids
• Obsessively exercising
• Social isolation and withdrawal
• Fatigue, fainting, dizziness

“I have found through my somewhat short journey so far, that eating disorders are really not understood very much. Of all the mental health conditions, it has one of the highest mortality rates, yet it feels like it’s the least understood. It’s such a specialised area!”- Bow

Supporting someone with an eating disorder 🦋

According to the butterfly foundation, family and a support network play a crucial role in the care and recovery of individuals with eating disorders. For adolescents, Family based treatment and supportive family therapy are the strongest treatments currently being used.

The impact of an eating disorder is not only felt by the person experiencing it, but also their support network. Family members and friends often feel distressed about what is happening. They may feel helpless, confused, anxious, fearful about mealtimes and wondering what to prepare. It is important to remember all these feelings are valid and normal. Caring for someone with an eating disorder is incredibly stressful. There are support groups available and when caring for anyone it’s important to practice self-care and to take time away from the carer role when possible. Connecting with people who have a shared experience is helpful and stories of recovery instil a sense of hope.

“Recovery is really hard. We relapse. We will be resistant and even deny there is a problem. Recovery is not linear. Still love us. Remind us why we want recovery. That change is possible. That help is available. And when we fail, remind us that there is always tomorrow.”- Bow

Steps you can take to be supportive 🦋

• Educate yourself- learn as much as you can about understanding the eating disorder
• Take notice. Even in the small details. All eating disorders are different and no 2 sufferers are the same. Ask questions, try and understand the why’s.
• Attend medical appointments if able to
• Try and understand what the feelings and emotions are that are underneath the eating disorder.
• Listen without judgement. 
• Role model positive body image- respect diversity
• Encourage the person you care for to take a step back from social media
• Remind yourself they are still the same person beneath the ED
• Communicate openly and try to be compassionate and empathetic
• Take away the pressure at mealtimes
• Ask how you can help and support them specifically.
• Give choices and control. For some, an eating disorder is very closely linked to control.
• Help prepare for the meal; this can involve doing some grounding exercises before.
• Help with distraction during and after meals. 

Support and further reading for carers 🦋

Butterfly online support groups  

Strive support groups 

Caring for someone with an eating disorder 

Carers and lived experience perspective  

Wellness tips for carers 

“Often, we don’t even understand why we do the things that we do and think the way that we do. It’s a really confusing and isolating journey.”- Bow

We want to hear from you, If you have lived experience or are caring for someone with an eating disorder, you are not alone. Reach out to us here or over at The butterfly room ED support  so the wonderful SANE community can support you. 

Please ensure this is a safe space and if this discussion has been triggering for you please reach out to crisis support or Butterfly helpline 🦋

[Former-Member]

I just wanted to say thank you to @Bow and @Paperdaisy for compiling this post. Eating disorders aren't something I've had a lot of experience with personally, so this is really informative and I think it will be a great resource for carers and family members of people with an ED. I really found the list of steps you can take to be supportive super helpful.

Thank you 💙

[Bow]

Thank you for allowing me to be involved and sharing some of my journey 🎀

[Former-Member]

Dropping by to add a few member tags for those who might be keen to jump in to this thread @Corny @Faith-and-Hope @ShiningStar @pinklollipop15 @maddison @Determined @Shaz51 @Susa 

[Faith-and-Hope]

Hi Everyone 👋💕

I am dropping in to add my encouragement and support, but my circumstances have changed rather dramatically since joining the forums.  When I first came here I was trying to support a severely eating disordered spouse and flag down medical help / intervention, for him as the sufferer who didn’t know he was a sufferer, me as his wife, and our children who were being thrown around by his condition.  We were all living with an undiagnosed eating disorder.

Another, even more serious condition appears now to have been underpinning his issues with food and exercise, and equally difficult to diagnose is a personality disorder, which appears to have been driving the ED.

I have to keep saying “appears” because nothing was ever diagnosed, and the NPD pattern followed through the devaluation to discard cycle, with an ongoing Family Law matter to address massive hidden betrayals events beyond the fact that he had re-partnered without my awareness before the marriage ended, and had embedded our disabled daughter in that relationship, also without my awareness until D2 (daughter 2) spilled the beans without understanding the dynamics or consequences.

Whether x is still in the grip of his ED I don’t know, but I was told throughout our struggles by medical professionals, as generic advice, that if someone were to be doing what I was describing they were, it was unsustainable and would result in a health crisis eventually - but that there was little to no chance that it could resolve itself,  He was going to need help and support in the longer term.

The kids and I are no longer involved with x at that level, however I am more than happy to support others in a similar situation in any way I can.

🌷F&H

[Shaz51]

Hello @Paperdaisy , @Bow , @Faith-and-Hope , @Former-Member 

am thinking my mum has a eating disorder but she would totally disagree with you but she gets "meals on Wheels" which she only eats a mouthful out of the whole meals for lunch and then only has a mouthful of custard for dinner 

[tyme]

How incredible @Bow ! Thank you for sharing. You have trusted the SANE community in sharing a part of your life that has posed many challenges - we are very grateful.

Also, thank you to @Paperdaisy for starting this very important thread. As @Former-Member has mentioned, it has brought much insight to not only me, but the community.

Thank you!

tyme

[Shaz51]

t is hard @Paperdaisy , @tyme , @Faith-and-Hope , @Former-Member , @Bow 

have been leaving arrowroot biscuits for mum so she eats them with her cuppa 

[Faith-and-Hope]

Yes @Bow ❤️, as @tyme said so well, thank you for having the courage to share your personal story with an ED with us - I am sorry I didn’t acknowledge that well enough in my post.  I have so much appreciation how difficult it is to have to acknowledge the issue and reach out for help and ongoing support.  You are brave and strong and generous in what you have achieved and continue to share towards helping others.

[Faith-and-Hope]

That sounds hard @Shaz51, but you are doing something sensible about it within that disempowerment you feel.  The milk arrowroot’s will help to sustain your Mum, and while a higher nutrition intake would be more ideal at her age and in her condition, part of working with an ED is recognising that nothing is ideal, so making incremental inroads is massive in the overall picture.

It is also about helping the person to feel empowered themselves in other ways, because there are invariably underlying issues which result in the person trying to seek and maintain control over low self-esteem, or unhealed inner pain, or a relationship that is unbalanced ….. something ….. which may have nothing at all to do with you.

Live and compassion are essential in the ED carer, but also boundaries.  You need to recognise that you are walking along with your loved one, but it is them who needs to take the steps towards wellness.  You can’t do it for them.  Apart from drawing boundaries around behaviours, you can’t push them either.  The baby steps are theirs to take, and acknowledging that is to respect them, which is part of the healing they need.

Keeping your own balance within their orbit is important too, and not focusing on food or exercise with intensity yourself.