Supporting Someone with an Eating Disorder During COVID-19
A COVID-19 has led to a surge in the number of people struggling with an eating disorder. Secondary care specialist eating disorder teams are stretched beyond their capacity and waiting lists continue to grow. GPs are growing increasingly anxious how best to manage these high-risk patients, and families are feeling desperate when asking for help. We know psychological therapies for eating disorders are the treatment of choice but there are often long waits to start these and if a person is motivated and has come forward for help, this is a window of opportunity. A chance for that person to stabilise and ultimately, stop getting any worse. The journey towards recovery may take time but waiting for help shouldn’t. Hence the best response to this pandemic…start now.
What can we do, and do we have to be eating disorder specialists to help somebody stop deteriorating with their illness? The answer is “no”. The aim of this Support Pack is to provide tools and resources in your own areas of work to deliver where and how you can, but not to delay. You may be a nurse in a doctor’s surgery, pastoral care at the school or college, a support worker within your local mental health team or a care worker in a hospital clinic/environment. Your role does not matter but your input does.
Exploring concerns and checking out if there could be a problem
Four simple questions can give you information as to whether there may be a potential problem/eating disorder. If any of the answers are yes, further questions will be required, relating to food and mood. The person should have already been referred to the specialist eating disorder service locally via their GP (if not, see “requesting a referral, below”), however the ABCD can be a useful probe in helping to understand the person’s concerns and may help them to open up to you without having to elaborate if they are not ready to (hence the yes/no questions).
We know that a person who receives help at the earliest opportunity has the best chance of recovery and the longer someone suffers without support, the more entrenched their eating disorder becomes. The most important step is to help somebody access their GP for both a review of their physical health (and to enable a referral to be sent to the local eating disorder team.
Often the sufferer is scared to ask for help or feels that they are not bad enough. Therefore, encouraging them to take somebody with them/provide consent to share information, will be helpful in your role as an advocate. Some GPs are unaware of the processes, so going to the appointment armed with the information is useful and prevents delay. Example being, providing the GP with the link for the specialist eating disorder team and referring to the eating disorder guidelines i.e. NICE. Historically some GPs were caught up in BMI thresholds and at times, this may still present as a barrier, however it is important to emphasize that BMI should not prevent a referral and that it is more important to focus on the patient’s symptoms, eating disorder behaviours and what is going on in their head.
What to say and not to say
Generally, someone with an eating disorder finds it hard when people comment on their appearance. Avoid mentioning someone’s size and, if they are improving, avoid conversations such as, “You’re looking well” and replace with “You have more colour today” or “You look more animated”. Occasionally you may be asked to comment on whether the person looks like they have put on weight. Whichever way you answer, it is unhelpful. If you say “no”, the person gets a buzz, a sense of achievement and they are “spurred” on by the illness to keep going and if you say “yes”, the person feels they have failed and needs to do better, so that next time they see you, they have lost weight.
If the person has set some goals with you, for example they may agree to eat breakfast and they have challenged this and done well to make the change, they are unlikely to find “well done” helpful. For someone with an eating disorder, “well done” highlights that they have gone against the voice. It is usually more helpful to acknowledge the struggle by responding ”I can see you have worked really hard to tackle that and know it couldn’t have been easy for you”.
To weigh or not to weigh
Weight is an important part of monitoring someone with an eating disorder and though there are times when it is inappropriate to request frequent weighing (that is, you have a trusted baseline and the person is eating well and not engaging in risky eating disordered behaviours), you or the GP will need to monitor this closely.
What difficulties might you encounter?
- The person does not want to be weighed. Try to explore their reasons. Are they worried they will be exposed, that is, will have to stop doing some of their behaviours?
- Do they feel they have failed if they have gained weight and this is an avoidance, that is, “I’ve let my eating disorder down”?
- Are they worried that if you see they have gained weight/are stable, you will think they are a fraud or no longer needing support?
- The patient has been fabricating their weight, that is, water loading, adding weights, wearing extra layers, and is worried they will be found out.
- The patient is fearful that your scales will be different to the ones they have been weighing on previously.
- The patient does not want to see their weight.
Try to help the person explain their anxieties and come up with a reasonable and safe plan, that is, “to ensure your safety and to enable me to look after you properly, I will need a baseline weight, but we can look at ways of making this manageable for you”.
- the person weighs with you f2f (if possible) – being aware of potential to water load, add weights, heavy clothing, tries to change the times of day/different scales.
- they weigh on Microsoft Teams /Zoom with you at the start of their appointment and show you the scales.
- they weigh on their own and send you a picture (caution is needed with this option if there is a history of fabricating weight or you are concerned the person may not be truthful).
- they weigh with a loved one and the loved one sends it through via email
- they weigh at their GPs (if GP surgery is accepting of this) and the number is recorded on system 1 or equivalent
Exploring the next steps to stabilise
While you are not offering therapy, you can help the person to start thinking about the effects of their eating disorder. Questions that can be helpful include:
- “Have you noticed a difference in energy levels since you have been cutting down on your food?”
- “Can you concentrate as much?”
- “Do you feel the cold more?”
- “Do you worry about things more than you used to?”
Suggestion – encourage them to look at the pros and cons of their current problem via Eating Disorders Worksheet – 01 – Change Process Balance Sheet.pub (health.wa.gov.au)
Share with the person some information about eating disorders and the effects on the body systems via Eating Disorders Information Sheet – 14 – What are the Risks.pub (health.wa.gov.au)
A person with an eating disorder is often surprised when asked if they have any rules. The initial, most common response is “no”, until you ask them to think about anything they can and cannot do in relation to food each day. You can then ask them to write down their rules (in order of severity) and think about whether they are happy to continue to follow them daily. Often these rules take considerable time and effort to accommodate, and they get in the way of normal life. If the person is willing, ask them to consider tackling one of their rules before they next come back to see you. Some examples or rules:
- I must wait until 9am before I’m allowed to eat anything
- I must walk 5000 steps before I can have my morning cup of tea
- I can only eat with a certain set of cutlery
- When I eat dinner, I must save the carbohydrate until last
- I mustn’t finish before anyone else at the table or I’m greedy
- I must always leave a bit on my plate to show I’m in control
- I’m only allowed chocolate if I’ve been for a run
- Nobody is allowed to touch or make my food in case they add extra calories
Someone with an eating disorder often refers to “the voice”. This voice is the bully that is the eating disorder. The thing that nags away at someone when they are eating, when they haven’t followed the rules or have had to challenge an eating disorder behaviour and are made to feel bad. Often, the voice is described as a gremlin on a person’s shoulder – one side, the rational side, tells the person they should not listen to the voice, should eat normally without guilt, and not give in to the eating disorder behaviours.
The other side is the illness, the voice that feeds on eating disorder behaviours. The voice often gets lounder when the person tries to overcome it and it can cause huge anxieties for the person battling with the eating disorder. The voice generally tends to be the person’s own voice but sometimes, it can be described as associated to someone the person has known.
The voice is often constantly in somebody’s head, from the moment they wake up. Sometimes, the voice is described as positive. For example, it commends the person if they have carried out the eating disorder behaviour and makes them feel a sense of achievement, powerful and in control. So, the voice conversely can also be described by the sufferer as the best friend.
Coping with the thoughts
Thoughts are often the most bothersome challenge for a person with an eating disorder. The eating disorder thoughts torment them daily and they want to know how to manage them.
The first thing to try to help the person to understand is, that a thought is just that. Is has no power over them and cannot harm them. The consequences only come into effect when the person carries out the eating disorder behaviour. A way of describing it is to put it into the context of being in a supermarket. You have the thought to knock all the Christmas advent calendars down as they are stacked up neatly. The thought may be nagging away at you the whole time you are shopping but would you do it? Generally, not. You learn to sit with a thought and not to act on it and you see it passes without harming. This is called sitting with the thought. You can associate it with a moving cloud that will pass.
Keeping busy so that the thoughts do not take over – this is something a lot of people with an eating disorder do. After mealtimes is particularly stressful for someone with an eating disorder and it is not always possible to sit with the thought if it becomes overwhelming. Carrying out an activity such as arts and crafts, a board game, going for a walk (controlled not for calorie burning), watching a film or making a phone call to a friend, is called distraction. Distraction can be useful but there comes a point where it isn’t always helpful if the person isn’t dealing with the thoughts. If the person continually distracts themselves, when they do sit quietly and stop, the thoughts tend to come back louder.
Asking the person to think about what they would like to get back in their life, once they are in recovery, can be helpful. Getting back on a horse, being able to have a meal out with friends or being able to cope with a holiday – these are all motivators and reasons for wanting to get better. Things like this can be a good reminder when someone is struggling, and you can suggest they make a vision board/placemat for focusing on when the eating disorder voice is loud and trying to prevent them from moving forward. This is called motivation — creating a reason to get well for, a purpose.
Challenging the eating disorder thought. This is when the sufferer hears the thought but does not act on the behaviour by looking at the evidence or fighting/answering (mentally) back at it. This can be via a notebook or journal with written reasons why not to give in to the eating disorder behaviour.
An example of challenging a thought: “You haven’t been out for your run today therefore you don’t need to have your snack this afternoon.”
Challenging response” “My afternoon snack is needed to keep my blood sugar levels stable and not as a reward for exercise. It is part of normal eating. If I miss my snack today it will be harder to have it tomorrow as I will feel I have got away with it today and tomorrow I will feel more guilty”. Another example: “I look so fat today I must have gained so much weight since yesterday”. Challenging response: “The clothes you wore last week still fit and there is no change to your weight so the thought is just that, it is not a fact.”
When someone listens to the eating disorder voice/thought, and they carry out the behaviour, that is, they miss a meal, it’s like the person giving fertilizer and water to a plant and making it grow bigger/louder.
Pie chart and letters
You can ask the person with the eating disorder to draw two pie charts. One of their life currently so they can see how much of the pie is taken up by their eating disorder. The second, how they would like their life to be made up. That is, with time for family, friends, work, education, hobbies, travel and so on.
Ask the person to write themselves two letters in a year’s time. One where the eating disorder has continued to dominate their live and one where they are free and what life is like for each outcome. This can include impact on physical, social, and emotional wellbeing and describe friendships, relationships, work/education.
Negotiable and non-negotiables
Negotiables and non-negotiables can be useful to establish with the person with the eating disorder, to ensure they have some control over their support plan but also understand what cannot be changed or challenged. Example being, “You need to attend your GP for the regular health checks – this is non-negotiable for safety”. A negotiable might be, “You can decide what time you have your snack so long as you have had everything on your plan by the time your head hits the pillow at bedtime.”
Setting the boundaries and expectations with a contract can assist in helping the person to feel safe and contained. People with eating disorders often fear unplanned tasks or appointments and changes to routine so having an agreed plan can help reduce these anxieties and ensure all parties are aware of the agreed expectations. Having a contract can also help the sufferer to take ownership and feel they are accountable to someone or something which is often a helpful motivator.
People with eating disorders are often conflicted by the wish to follow their eating disorder behaviours and the desire for someone to “give them a break, allow them to eat and take control”. Preventing wiggle space helps the sufferer feel contained and this involves having a consistent plan with no loopholes as far as possible.
An example of wiggle space: the sufferer goes to different family members and purposely forgets to take their food, says they will eat when they get home, knowing they never allow themselves to eat past 7pm and have no intention on having the missed meal when they arrive home. Or, telling a parent they need to do the shopping so that they can look for the lower calorie alternatives.
What makes you, you?
Often someone with an eating disorder feels they have lost their identify and become “an eating disorder” with not much else in their life. Trying to help them gain a sense of who they are again can be helpful in enabling them to see that they are not an illness. If the sufferer can learn to separate the eating disorder from themselves as a person, this often helps them to fight harder for a recovery. You can ask them to invite two people close to them to write them a letter titled, “What Makes You, You”. These letters are often very powerful in that they show the sufferer from another person’s perspective, how little importance is placed on their appearance, shape, or weight and that they are valued for the person they are and the qualities they bring.
You can also ask the person with the eating disorder to think of people they admire, perhaps a family member or influencer who has died and ask them what they remember most about that person. Do they remember them for the number they weighed on the scale or their clothes size or are they remembered for the impact they had on society and what they contributed to them or the world?
The person who doesn’t want to give up their eating disorder
When you look at the pros and cons, there are always some positives that the person feels they get from the eating disorder. The illness may have brought the family closer together, the individual may get noticed in school or college for ‘willpower’ or they may get a sense of euphoria from starving themselves.
You can talk to them about being in control. One way to describe it is to think of it like driving a car. When you are in the grips of the eating disorder, you are the passenger and the eating disorder is in control, driving you around and making you carry out the behaviours.
When you are the driver, the ED can be the passenger, that is, it doesn’t have to leave your life if you are not ready, but you can be the driver or your destination – you are in control as opposed to the eating disorder. A good way to see how motivated to change they are is to ask, “If you had a magic bean and took it right now to get rid of your eating disorder, would you take it?”
Many service users say “no” because of what the illness gives them. That’s why it is often better to talk to the person about managing their eating disorder or “stabilising symptoms” so that it is in a little box but that the person has the key.
Professor Janet Treasure has written many books on caring for a Sufferer/Loved one with an eating disorder and describes the approach in terms of animals which include:
Rhinoceros – this is the person that wants to go charging in to fix the problem.
Ostrich – this person will bury their head in the sand, may play down/minimise the eating disorder or ignore that it is happening
Kangaroo – this person likes to try and carry the sufferer through their journey, often doing it for them (that is, the sufferer refuses to get food for themselves and the kangaroo takes on the role of always preparing and taking food to the person and that is the only way they will eat, not wanting to take any responsibility and letting someone do it for them).
Dolphin – this is the recommended approach whereby the carer swims alongside the sufferer on their journey, often giving them a little nudge to get back on track with the flick of the tail when they start to wobble.
However challenging working with someone with an eating disorder can be, there is always hope. Your words, care, perseverance, and compassion, can and will make a difference. Many people with eating disorders have gone on to achieve a good quality of life, learn to manage their symptoms and are forever thankful for people who never gave up on them, even in the toughest of times.
This article has been written as an education resource only, by an individual with lived experience. The information is not intended to be used as a substitute for professional medical advice, diagnosis, or treatment and not all people with eating disorders will experience all the symptoms described.