A person is typically in the maintenance stage when they have begun to maintain the action and changes they decided upon by themselves or with a treatment team (in relation to their physical health, behaviours, thoughts and feelings), and are now resisting relapse. Maintenance is not a linear process, as momentary lapses and relapses can occur, and it is not a one size fits all approach.

On our family support services, carers can have a lot of questions surrounding the maintenance stage. Wondering, where to go from maintenance, or how to move from maintenance into a more ‘non-ED’ world. For carers, it can be a balancing act, deciding on when to step in and when to step back, feeling afraid of doing something that may affect their person’s tentative recovery.

What are the challenges?

Carers shared about the challenges they experience from maintenance to beyond in this session of Conversations with Carers. Some of the main challenges included:

• Feeling ‘left in the dark’ supporting an adult
• Person experiencing body image issues
• Person wanting to take more responsibility over their nutritional health
• How to use contingency plans and prevent relapse
• Improving their person’s self-esteem and self-confidence
• Person’s anxiety transferring from ED behaviours to something else
• Whether to let their person know their body weight
• What happens after support options and how to know when their person is ready to stop attending support options

What’s helpful?

One of the most prominent messages from carers is that you or your person are never back at the beginning. Although the maintenance stage may encompass challenges, lapses and potential  relapses, all of this contributes to your person’s resilience as they draw from what previously worked to help move forward. Carers emphasise how valuable open communication and trust is with your person, in order to resist relapse.

If you are struggling to know whether your person is moving from maintenance to recovery, carers recommend thinking of it like a continuum, rather than a destination. It might be also helpful to frame it as ‘in recovery.’ Try not to focus too much on the future, as taking it one day at a time can be less daunting for you and your person. A helpful tip from carers is to look out for ‘green shoots of recovery’ – anything that your person does to actively try and maintain the changes they have made. Affirming these ‘green shoots of recovery,’ focusing on their intention rather than outcome, can have a positive effect on your person.

If you are wondering how or when to step back, carers advise doing this tentatively. Unfortunately, there is no straightforward answer. It can be helpful to think of your overall goal, and then work your way backwards, breaking it down into small steps, so that you can slowly move towards your objective. For example, if you are wondering how to stop asking whether your person ate their lunch, carers recommend trying build a solid foundation of trust, implement a very small change as an experiment (i.e., not asking one day), and then evaluating what worked and what didn’t.

Carers recommend many ways to help you and your person during the maintenance stage. For instance, talking about emotions, the trials and tribulations of everyday life, and role-modelling coping with difficult situations can be very valuable. If you would like to bring up something about the ED with your person, carers advise to not be frozen in fear. Having an open dialogue and continuing to show up for your person is key to the maintenance stage.

FAQ

• How can I help my person maintain the changes they have made during the middle of maintenance?
  • Carers recommend reminding your person that they still have an eating disorder, and that they may still have some distorted thoughts. Now more than ever it is important to externalise the eating disorder, and provide space for your person’s voice to prevail over the ED’s. If your person is struggling with changing body image, it can be valuable to highlight how their body is more than an aesthetic object, and that their value as a person is not reliant on their body.
• Should I let my person know their weight during the maintenance stage?
  • This is a difficult question, as there is no right answer, and it depends on the person and their situation. On one hand, when a person knows their weight, it can take the importance out of it, as it is just a number. For some carers, this works for their person. On the other hand, a person may be overwhelmed by knowing their weight, as it may cause the ED voice to become louder and defiant. If you are wondering whether you should share this with your person, perhaps it may be helpful to first have a conversation about body weight, demystifying the numbers, and working on boosting your person’s positive body image. There are resources to help you do this on our body image website.