Supporting people experiencing disordered eating

From Queercare
Jump to navigation Jump to search

This protocol is under review, and has not been accepted.

We are currently gathering feedback and editing this protocol, and there may be errors or bad wording. Please only use this protocol with caution, and if other organisations have definitive protocol, use that instead.

Please see #protocols on Slack to discuss this protocol further.

This document is seeking review by people who have lived experience in the area it covers, please use this form to provide feedback

More documents in need of lived experience review can be found here.

This protocol should be used alongside the general Mental Health Intervention Protocol.

This protocol focuses on considering disordered eating in two main categories - restrictive/avoidant and binge and binge/purge.

It’s important to remember that these are not binary absolutes - people can have experiences that cross or are a mixture between experiences in both these categories, and the way that people feel around eating can change over time.

For example, it is not uncommon for people who have experienced extended periods of restrictive eating to later develop binge or binge/purge eating habits. This is often because their body has not had access to the nutrients or energy it needs and is trying to ‘catch up’. However, the emotions and experiences that led to the person feeling like they needed to control their food intake are ongoing and the person still feels like they have no or few other options.

  • Restrictive eating is where someone limits their intake of energy (food, drink and rest).
  • Avoidant eating is where someone avoids certain foods or types of foods.
  • Binge eating is where someone eats a large amount of food (past the point of physical fullness) over a short period of time and feels a sense of having no or limited control over what they’re eating.
  • Binge/purge eating is where someone experiences binge eating and then feels caught in a cycle of trying to ‘compensate’ (for example, by fasting, vomiting or exercising more than they are able to). This is called purging.
  • Some people also experience purging without binging.

It’s important to remember that there is no one specific reason why someone may be experiencing disordered eating. For example, some people place strong emphasis on their weight and body, such as a desire to control how they look or a distorted view of what they look like. Others see their behaviour around food as self-harm, or as a way of being in control when their life feels out of control. Many people understand experiences of disordered eating as being for a mixture of complicated reasons, or may not be sure about where their experiences are coming from.

Principles for supporting someone who is experiencing disordered eating

  1. Remember that it is not your role to ‘fix’ someone, only to be there to support them through what they are experiencing.

  2. Start with listening. Be open and non-judgmental.

  3. Avoid perpetuating stereotypes, such as that everyone who experiences restrictive eating is medically viewed as ‘underweight’ or that people who experience binge eating are ‘greedy’. Make sure you challenge stereotypical views you yourself may hold.

  4. Don’t make assumptions about the behaviour of the person you’re supporting or their motivations behind it. Don’t assume that everyone who experiences similar behaviour around food is experiencing the same emotional state, or that they will benefit from the same kind of support.

  5. Avoid making comments about what people are eating or what their bodies look like.

  6. Understand that disordered eating can happen for many different reasons and is often a coping response to a larger problem.

  7. Remember that people’s relationships with food and eating, as well as what they find helpful and unhelpful, change over time and as their life circumstances change.

  8. Remember that disordered eating habits tend to have both mental and physical impacts - for example, feeling ashamed (mental) and experiencing digestive pain (physical).

  9. Be clear on your boundaries and make sure you communicate these to the person you’re supporting.

  10. Respect the boundaries of the person you’re supporting. This includes recognising that sometimes their eating habits are coping mechanisms that feel important and/or necessary for them, and they may not want to challenge them. In this situation, you should focus on supporting the person with other stressors in their life (if this is what they want), and let them know that you are around if they would ever like to talk about their experiences and/or emotions around food or eating.

  11. Understand that conversations around food and eating can sometimes cause people to feel strong emotions, such as anger, shame, or that they are not being understood. This can cause people to act in ways that seem ‘out of character’ for them. Make sure to focus on active listening and work with the person to talk about how they are feeling and what would be helpful from those around them.

  12. Understand that for some people, the impacts that disordered eating are having on their lives are clear, whilst others mask what they are experiencing so that few people or no one around them is aware. Don’t assume what someone is or isn’t experiencing.

  13. Understand that experiences of disordered eating can make people withdraw from those around them and that continuing to show up for someone in a non-judgmental way is one of the most important forms of support.

Avoidant and restrictive eating

Restrictive eating is where someone limits their intake of energy (food, drink and rest).

Avoidant eating is where someone avoids certain foods or types of foods. This becomes disordered when it begins to have a significant impact on their ability to eat as they usually would.

There are many reasons why people may be experiencing avoidant or restrictive eating. For example, they may:

  • Feel that they need to lose weight or have a specific body type.
  • Feel that they don’t deserve food, energy or rest.
  • Feel that they need to control food when other parts of their life feel out of control.
  • Feel fear around food, or feel afraid of choking, vomiting or pain as a result of eating.
  • Be sensitive to the taste, texture, smell, or appearance of certain types of food, or only able to eat foods at a certain temperature, and avoid foods that don’t fit these sensory needs.
  • Not recognise that they are hungry, and have a low appetite or no interest in food.
  • A range of other reasons, or a mixture of the ones listed above.

Someone who is experiencing avoidant or restrictive eating may:

  • Miss meals
  • Limit the amount or types of food they eat
  • Avoid eating with other people
  • Eat very slowly
  • Hide food
  • Count calories in food
  • Be unclear about when or what they last ate
  • Talk frequently about dieting or being on a diet
  • Feel like they must ‘compensate’ after they have eaten, such as through exercise or other forms of self-harm
  • Start exercising more than they usually do

Physiology

There’s an image that people who are experiencing restrictive or avoidant eating will appear to be ‘starving’ or similar- this is not the case at all. Malnutrition can manifest in many ways, including long term nutrient deficiencies which do not manifest as stereotypical symptoms of malnutrition.

Never assume a person is lying or otherwise incorrect if they tell you that they are experiencing restrictive or avoidant eating but do not have the body type you expect, or have patterns of eating (or hobbies, such as cooking) which do not mesh with stereotypes - people’s experiences differ wildly.

People with restrictive and avoidant eating patterns often experience symptoms of malnutrition. Some examples of these are:

  • Feeling tired and getting fatigued easily
  • Feeling very cold
  • Hair loss
  • Mood swings
  • Irritability
  • Bone problems
  • Irregular heartbeat

If someone is not getting enough nutrients (as part of or beyond restrictive or avoidant eating patterns) taking a multivitamin is a good idea.

Supporting someone who is experiencing avoidant or restrictive eating

Disordered restrictive and avoidant eating is different for everyone, and the support that helps one person may not necessarily help another.

You should go through RAISED with the person you’re supporting, focusing especially on Stressors and Environment. Work with the person to understand what their experiences around food and eating mean to them. Use active listening skills, asking open-ended questions and validating the person’s emotions and experiences.

Talk about techniques and strategies that they find helpful or unhelpful. If they are not sure, it can be helpful to offer suggestions that you can try together.

Think about creating positive mealtimes:

  • Plan ahead to take all decision-making out of the meal itself. Support the person to plan what they are going to eat, where they will eat it and who they will eat it with. Think about any adjustments that will make it easier - for example, some people prefer to be alone when they eat, or to eat at the same time as other people.
  • Support the person to create a routine. Many people find it helpful to put their meals and snacks into their timetable or schedule before they plan out their other activities and tasks. Make sure to leave enough time for the food itself and some time after for decompression.
  • Make sure to leave enough time for food, as it can sometimes take longer than people think, and all planning is aimed at reducing stress.
  • Plan activities to help the person get in the right headspace before meals, especially ones that help them to feel calmer or more positive.
  • Help the person to think about what support they may need to be able to stick with the plan - eg. asking other people to check in with them, or people they can be honest with if they aren’t able to stick with it who will be non-judgemental.
  • Plan strategies for calming during the meal itself, such as watching distracting videos or talking.
  • Help the person to think about the time after the food and what they will do here. This time can be difficult as strong and overwhelming emotions can make people feel like they need to ‘compensate’, for example by purging or self-harming. Support them to think about what kind of feelings they usually have and what kinds of support might be useful - for example, spending time with certain people or taking part in certain activities.
  • Regularly review and debrief meals a few hours after each one in order to make plans better.

Some people find it helpful to externalise their thoughts and feelings around food and eating, such as having other people ask questions like, ‘What did the eating disorder say to make you feel unable to eat your snack?’ or ‘How does the eating disorder make you feel about yourself?’

  • This can be helpful for people who want to look at their experiences as separate from them as a person, and people who perceive different realities that contribute to their behaviours around food and eating (eg. voices telling them not to eat)
  • For others, this can feel patronising or dismissive of their experiences

Some people find it helpful to set boundaries with themselves around things such as exercise or weighing themselves. They may find it helpful for others to check in with them around this.

Sometimes people who are experiencing disordered eating, especially those who are receiving support from mental health services, feel like food or eating has become their whole personality or all they or those around them can think or talk about. This can be an extremely isolating experience. Because of this, some of the best support can be to plan and do regular activities that have nothing to do with food that both/all of you enjoy doing together.

If the person you are supporting wants to seek out support from mental health services, you can help them to do this.

You can also help the person you’re supporting to access peer support groups if this is something they think they would find helpful. A UK eating disorder charity called Beat runs online moderated support chat rooms which can be helpful.

Binge and binge/purge eating

Binge eating is where someone eats a large amount of food (past the point of physical fullness) over a short period of time and feels a sense of having no or limited control over what they’re eating.

Binge eating is generally very stigmatised (this means that people often have negative stereotypes and assumptions about people who experience binge eating), which can make it even more challenging for people to feel able to talk about it.

People who experience binging generally feel a loss of control during binges and find the experience distressing. They may feel disconnected from themselves or their body or find it hard to remember afterwards what they have eaten. People who experience binge eating often feel emotions such as shame, disgust, guilt and embarrassment.

Binge eating episodes can be triggered by a wide range of emotions and experiences. Some common triggers are:

  • Feelings of loneliness or wanting comfort
  • Feelings of anger
  • Feelings of sadness
  • Feelings of shame or embarrassment
  • Restricting food intake (eg. missing meals)

People who are experiencing binge eating may:

  • Buy lots of food
  • Eat very rapidly
  • Eat when not full
  • Feel secretive around food
  • Avoid eating around others
  • Withdraw from their social networks
  • Experience irritability and mood swings

Binge/purge eating is where someone experiences binge eating and then feels caught in a cycle of trying to ‘compensate’ (for example, by fasting, vomiting or exercising more than they are able to). This is called purging.

Purging is often triggered by feelings such as shame, guilt, disgust, fear of gaining weight or as a way of dealing with feelings of overwhelm and distress that can come from binging. Often, people who experience binge/purge eating feel trapped in a cycle. This can be very distressing and make people feel ashamed and frustrated.

Physiology

People experiencing binge eating may experience physical impacts such as tiredness, stomach pain, difficulty sleeping and skin problems

Binge/purge cycles have big impacts on people’s physical health

  • People may experience lack of nutrients
  • Other physical impacts that people experiencing binge/purge eating may experience are:
    • Stomach pains
    • Swelling hands and feet
    • Damage to teeth
    • Rapidly changing blood sugar and electrolyte levels

Supporting people experiencing binge and binge/purge eating

Binge and binge/purge eating is different for everyone, and the support that helps one person may not necessarily help another.

You should go through RAISED with the person you’re supporting, focusing especially on Stressors and Environment. Work with the person to understand what their experiences around food and eating mean to them. Use active listening skills, asking open-ended questions and validating the person’s emotions and experiences.

Talk about techniques and strategies that they find helpful or unhelpful. If they are not sure, it can be helpful to offer suggestions that you can try together.

Never shame or threaten someone. Understand and respect that people are often likely to already be feeling high levels of shame, which can make it hard for them to talk about their experiences.

Work with the person to identify triggers for binges. Many people experience binge eating in between meals and at night.

Some people find support around creating positive mealtimes helpful (as discussed above), and some may find it helpful to explicitly also make plans for times between meals, and for nights.

Help the person you’re supporting to be able to recognise when they are in binge/restrict or binge/purge cycles, and help them to be able to signal this to those around them in a way that works for them.

If the person you’re supporting finds it useful and you feel able to do so, it is often helpful to think about avoid/delaying and harm reduction strategies.

  • People may find it useful to think about avoiding/delaying binging. You could:
    • Help them make a plan for noticing they have an urge to binge eat and then having a pre-decided set of a number of different activities to try before they act on the urge
    • Offer distractions
    • Offer to talk
    • Discuss triggers
  • Other people find it helpful, if their living situation allows it, to plan what kinds of food they buy and keep around them.
  • De-escalating from binge eating can be really distressing, and it can be hard to resist urges to purge or ‘compensate’ in another way. It can be useful to make plans for this in advance, to take decision-making out of the moment. This might include:
    • Having set people to reach out to or spend time with, in person or virtually
    • Making plans of a set number of activities to do before acting on urges
      • These are often more effective if they use a number of different senses, such as listening to music and having a cold shower, or tidying up and watching TV)
      • Some people find it useful to change their clothes, wash their face or have a shower
    • Think about the physical impacts of binging (eg. bloating or pain) and some ways to ease these slightly (eg. going outside, stretching)
  • If the person would rather talk about harm reduction for purging, and you feel able to do this, you could send them this resource and help them work out which of these kinds of techniques they could use.
  • Both binging and purging are physically uncomfortable and painful, as well as distressing, experiences. It can be helpful to think about you can relieve or deal with pain.