Three things we learnt at the F.E.A.S.T conference for parents and carers

23 Jun, 2020

F.E.A.S.T is a supportive community of parents and carers that spans across the globe and connects online. This year, the annual one-day conference F.E.A.S.T of Knowledge was hosted virtually.

InsideOut psychologist Rachel Simeone and carer consultant Bronny Carroll went along and here are some of the take home messages.

1. Food is Medicine

Often people wonder why there isn’t a huge focus on psychological therapy early on in eating disorder treatment. As a rule, the absolute top priority and focus is on nutrition, particularly when it comes to children and adolescents.

At F.E.A.S.T of Knowledge, paediatricians Dr Cipatli Ayuzo and Dr Debra Katzman explained why.

Food for an eating disorder is what medication is for other illnesses, such as insulin for diabetes.

Malnourishment, due to restrictive eating, results in many physical and psychological changes, which affect weight, energy, thinking, behaviours, and even personality (regardless of whether the person is underweight or not).

Food, however, resolves malnourishment and helps reverse many of these effects. Food allows the person to recover brain function, reverse abnormal behaviours, and prevent any further physical issues (such as loss of bone density). These are all important steps towards recovery.

So, the purpose of “prescribing" food is not so much that your loved one will gain weight (although that may be an outcome), but rather, to ensure that their body and brain has the resources it needs so it can function optimally. Proper nourishment helps to improve emotions and problematic thought patterns that are maintaining the eating disorder.

Let’s look more closely at the brain. The brain needs fuel in order to be able to think flexibly. Flexible thinking is a key to overcoming strict food rules and restrictive eating regimes. The brain also needs fuel to regulate hormones related to emotions. For example, nutrition can help your loved one to stop being in a highly anxious state (i.e. “fight or flight” mode), and thus, have more time and energy to focus on other important areas of their life.

Sometimes trying to help a loved one eat more regularly and consistently can result in a great deal of distress – that is a normal and expected response during recovery. If we can return to the medication analogy, we would encourage our loved one to keep going despite the side effects (distress), knowing the medicine will ultimately help them to recover.

2. Get Good at Tolerating Distress

Eating disorders and recovery cause enormous distress. Indeed, distress is a major side-effect from taking medicine (food) for an eating disorder.

Distress may come in the form of anxiety, shame, anger, sadness for the person with the eating disorder – but also for their support people and family. It is important that you have strategies to tolerate that distress and remain resilient.

Carer Dr Lucene Wisniewski spoke beautifully at the conference about the many strategies she has found useful as a carer, some of which are outlined below.

  • Remember that you already have many of the skills you need as a carer.

"The chaos of the illness tends to rob us of our confidence and trick us into believing that this problem is beyond us," Dr Wisniewski said.

However, it isn’t beyond you.

It is important to tap into skills that have worked for you in times of distress in the past - and to feel confident in your ability to use those skills to support your loved one.

  • Recognise your loved one’s emotions are like the weather.

We can observe them, we can try to predict them and to prepare accordingly - but we can’t change them and that’s okay.

It can be easy to fall into the trap of trying to change or resolve uncomfortable emotions, but actually, it is okay to just feel your feelings. Instead, you can focus on simply keeping safe and moving forward, despite experiencing strong emotions.

  • Get support from other carers.

You are not alone and reaching out to others who understand what you are going through is important.

Useful fact sheets: Urge Surfing \ Managing distress in person with eating disorder \ Pleasant and Distracting Activities

Strategies from Dialectical Behaviour Therapy (DBT)

Laura Collins Lyster-Mensh, Executive Director for F.E.A.S.T, explained some strategies from Dialectical Behaviour Therapy (DBT) that might also be useful for carers during times of distress.

The focus of DBT is to teach “life skills” and these skills are incredibly useful for everyone.

DBT includes a set of skills called “distress tolerance skills” the focus of which is to help with managing intense emotions in the short-term. Importantly, the purpose is not to make the emotions go away but to teach you the skills to tolerate them, and to act in a way that is not impulsive and will not make the situation worse.

Some top DBT skills you can use for distress tolerance:

  • STOP - Do something that helps you to slow yourself down so that you can step back, observe the situation and decide the best way to move forward. For example, writing out the pros and cons.
  • TIPP – Do something that brings your physiological arousal down so you can think more clearly about how to respond. For example, taking a cold shower or breathing exercises.
  • ACCEPT – Do something to distract yourself while you wait for the emotion to peak and pass maybe leave the situation you’re in for a while to give yourself a mental or physical break. It could be something as simple as going for a short walk or calling a friend.

DBT skills worksheets are freely available online from various organisations. For a summary of distress tolerance skills mentioned above, click here.

Different skills work for different people so you will need to experiment to see what works for you.

3. We all need to focus on siblings and giving them a voice

The experience of siblings has traditionally not been the focus of discussions or research. However, it is clear they need support and resources to understand their sibling’s eating disorder, and how they can provide support for their sibling whilst also having their own needs met.

Presenters Kym Piekunka and Bridget Whitlow recently completed a two-year survey into the experience and needs of siblings in the US. They are yet to publish the results, but they spoke about some of their findings.

Here are three main themes around what siblings may need to lift them up:

  • Acknowledgement and Support

The impact of having a sibling experiencing an eating disorder can be substantial. Siblings are likely to experience mixed feelings and big emotions. Unfortunately, their own needs are often dismissed - by themselves and others.

Further, siblings may find it difficult to get support. Their brother or sister is no longer there for them in the same way as before, and their parents may be focusing their attention on the child with the eating disorder.

A sibling may also find it difficult to confide in friends or family members, who may not know about the eating disorder.

It is important that their experience and feelings are acknowledged and addressed. This may be through a support group (EDFA has a list) or their own therapy (look for a local clinician on the InsideOut Treatment Services Database).

  • Communication

Siblings can really benefit from being told what is going on with their brother or sister. It can help to clarify their changing role in the family unit and enable them to feel more included in the process.

It can be an understandable response that, particularly with younger siblings, parents may try to “protect” or “shield” them by not talking openly about the eating disorder. If they are told “it’s okay” - when it doesn’t feel okay for them - that can be very invalidating. It could even leave them feeling more scared or anxious than if they had been told all the information.

They also need a safe space to communicate their own feelings. Many siblings find it hard to speak up because they do not want to put extra pressure on their parents or other family members. They also often feel unheard if they do speak up. Siblings need to have open and honest conversations and receive the message that it is okay to be upset and have your own needs.

  • “How to” skills

Living with someone with an eating disorder can be incredibly stressful. Siblings need age appropriate resources and strategies to cope with what is going on for them, and to support their sibling.

Learning new skills can help them to cope when with stressful mealtimes, with their own feelings, and to offer support to their sibling. Importantly, it can help them to cope with the “loss” of their sibling and family unit, as it once was. In some ways, it is like a grieving process.

For resources: KymAdvocates.com

You can read NEDA’s resource for siblings here.

All the F.E.A.S.T of Knowledge sessions were recorded and will be available free on the their website in coming weeks. Click here to watch.

InsideOut is currently developing an online skills program for carers, family members and other support people of individuals living with an eating disorder. If you would like to receive an email when this program opens for enrolments please go to: https://insideoutinstitute.org.au/news/coming-soon-insideout-s-online-training-for-support-people

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