EDANZ

Kia ora e te whānau,

Apologies for the delay in this month's newsletter. I like to have it out in the second week of the month, but this month has been extra challenging, with me being away from home supporting family.

I have, however, been keeping up with the news in Aotearoa and have seen a rise in media coverage of GLP-1 medication and peptides for weight loss. We know this kind of reporting can be triggering and distressing. Support is available. If you're directly affected, please contact JourneyED (www.journeyed.org.nz); if you're a family member supporting someone through this, our volunteers are here for you too. Call 0800 2 EDANZ (0800 233 269).

Ngā mihi nui,
Andrea Bonetto, Chairperson

Partners

When we talk about carers, we usually think of parents. But eating disorders don't only appear in childhood, and they don't always disappear once someone leaves home.

Spouses and partners of someone with an eating disorder carry a unique kind of weight. Unlike parents, partners usually have no legal or clinical standing in their loved one's care. They are not always included in appointments the way a parent might be, and treatment services are often not set up with them in mind. Yet they are there for meals, for the low moments, for dinners cancelled and every comment about food.

Eating disorders also touch parts of a relationship that are unique to partnership: intimacy, shared meals as a couple, holidays, planning a family. A partner may find themselves tiptoeing around what they say about food, around eating out, or feeling shut out of part of their partner's life. Many describe a loneliness that is hard to explain to friends who have never lived alongside an eating disorder.

It is also common for partners to be the first to notice something is wrong. That can bring an unfounded sense of responsibility and guilt about not noticing sooner or not knowing how to raise the subject without hurting their loved one. EDANZ often hears from partners asking for support to understand what their role should be.

By definition, a relationship between partners is one where power is shared equally. When one partner develops an eating disorder, it can be easy to think the other should take on the role of carer, becoming the food supervisor or a project manager in their loved one's recovery. However, taking on that role usually backfires. It can tip the dynamics of an equal relationship into something that feels more like parent and child, which helps neither partner and is often hard to undo.

What partners can offer, and what research consistently shows matters most, is a steady, informed, compassionate loving presence: someone who stays, who learns, who is honest about their own limits, and who takes care of themselves along the way.

Supporting your partner without losing yourself

Ask what support looks like to your loved one rather than assuming.
Let your partner's clinical team lead on treatment. It's not your job to diagnose or manage their recovery. You can support your partner by agreeing on a role together, whether that's meal support, emotional support, or applying skills learned through carer training (https://newmaudsleycarers-kent.co.uk/the-new-maudsley-method-training-manual/).
Separate the person from the illness: The eating disorder can drive behaviour, secrecy and defensiveness. This has nothing to do with how your partner feels about you. Identifying the illness as separate from your partner can help you respond with less hurt and more compassion.
Watch the small comments: Casual remarks about weight, food, exercise or bodies, even about yourself or other people, can land hard for someone with an eating disorder. Try to steer conversation toward how your partner feels rather than how they look or what they eat.
Keep talking, have conversations: Ask your partner what they need and what they do and do not want to hear. Equally, be honest with them about your own limits; you cannot pour from an empty cup, and pretending otherwise tends to build resentment over time.
Get your own support: Partners need somewhere to process what is happening. A support group, a counsellor, or simply a trusted friend who understands can make an enormous difference to how sustainably you can show up. Feel free to reach out to EDANZ for support, we are here for you.

Partners: what research tells us

There is very little research on partners of people with eating disorders, but the little there is tells a consistent story: caring for a partner with an eating disorder is hard, and partners are often left without the tools or support they need.

What partners go through: understanding disordered eating from the other side of the relationship
Schmit, S. E., & Bell, N. J. (2017). Journal of Health Psychology, 22(4), 434-445.

This study is one of few to ask romantic partners themselves, rather than the person with the eating disorder or disordered eating, what their experience is actually like. Drawing on interviews with 12 partners in dating relationships, it found that partners often had to build their own understanding of their loved one’s illness and worked out ways to support their partner largely through trial and error, with little guidance or resources available to them. Whether the person with the eating disorder had begun their recovery or not yet, mattered a great deal to how the partner felt. Partners of someone not yet in recovery often described confusion and helplessness, while those whose partners had begun recovery spoke of feeling a sense of purpose and relief at seeing positive changes. This is a useful reminder that partners are navigating a steep learning curve largely alone.

This section of the newsletter usually features lovely words from either those who have reached out to us for support or those who have appreciated our educational sessions, and we're lucky to receive so much of that warmth. It's what keeps us going, keeps us volunteering, and reminds us why we do this. This time, though, it's different. I think it's important to talk about the positives, and even more so about what we need to work on.

Our call-back programme has been a real success, supporting families along their loved one's recovery path. I've been abroad supporting family and I'm grateful I have the tools to keep my work going online while away.

But growth brings growing pains. Before I went away, while volunteering for EDANZ, I took a call from a carer and offered them a place on our call-back programme, which they gladly accepted. While I was away, I failed to follow up. That parent has just emailed us, understandably upset at not receiving the promised call. I wrote back, apologised, offered our ongoing support, and told them that they are right: they deserve better. Following up was my responsibility, and I didn't.

We at EDANZ are volunteers, but that's no reason not to follow up. With our new Te Whatu Ora funding, we're putting processes in place so this doesn't happen again. It is true that this is the first time it has happened, but there shouldn't even have been a first time.

To that carer: I'm truly sorry. If you need support, EDANZ is here. Please call us, and one of our volunteers will be there for you.

And to everyone reading this: we're confident this won't happen again. Making sure you hear back from us is, and always will be, our responsibility. If anything ever does slip or we seem a little slower than expected, please don't hesitate to reach out again; you will never be a bother, and we'd rather hear from you than have you wonder if you've been forgotten. We've been in your shoes, and we're here for you.

Andrea Bonetto, EDANZ volunteer and chairperson

A reminder that EDANZ's helpline runs all year, including holiday periods. Please don't hesitate to contact us at info@ed.org.nz or leave a message on 0800 2 EDANZ, and we'll get back to you as soon as we can. If you're worried about someone's safety, please call 111 or go to your nearest hospital Emergency Department.

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Join the EDANZ Helpline: Supporting others on the journey

The EDANZ helpline is a vital lifeline for families navigating the complexities of eating disorders. We are currently looking for volunteers to join us in providing support and guidance. If you have supported a loved one through an eating disorder and feel ready to give back, your lived experience is incredibly valuable. By joining our team, you can offer hope and understanding to those who are now walking the path you once travelled.

We welcome any amount of time you can offer, and every hour of support makes a profound difference for our community. Your unique perspective allows you to connect with families in a way that truly matters. If you would like to help us ensure that no one faces this challenge alone, please get in touch with us. We would love to discuss how you can contribute to this rewarding mission.

Get in touch

Upcoming support group meetings

EDANZ believes parents/carers have unique abilities to support one another and we hold regular meetings to which you are warmly invited. Currently, we're joining together around the country on the first Wednesday of every month over Zoom.

If you would like to participate in a virtual support group, please RSVP to info@ed.org.nz and we'll send you the link.

Upcoming meetings:

Wednesday, 2 September at 8pm
Wednesday, 7 October at 8pm

More information can be found on our website Parent/Carer Support Groups page

Remember: EDANZ helpline is open throughout the year, including holiday periods. Please don’t hesitate to contact us at info@ed.org.nz or leave a message on the phone 0800 2 EDANZ and we will get back to you as soon as we can. If you are concerned about the safety of someone, please ring 111 or go to the Emergency Department of your nearest hospital.