1. Caring for someone with an (severe or enduring) eating disorder
Understanding the psychology, looking after yourself, and the physical risks
Dr Calum Munro,
Consultant Psychiatrist in Psychotherapy, Eating Disorders Care Collective & Honorary Senior Lecturer, University of Edinburgh

2. Introduction & Plan Conflict of interest Outline for talk
A holistic psychological understanding of (severe) eating disorders
25mins & 15 mins discussion
‘Stuckness’ or change & providing care and looking after yourself
The physical risks of eating disorders – evidence & experience
20mins & 15 mins discussion
Happy to share my slides with anyone who wants them
I worked in the ANITT team in Edinburgh which is an intensive community treatment team for people with severe AN when Fiona Duffy asked me to come and speak to carers for SEDIG, but a few months ago I left the NHS and I’m now in the process of setting up a social enterprise to treat people with eating disorders and support carers – so now I’m working independently, I needed to declare that conflict of interest at the start
That aside my main aim today is to try to help you with developing your psychological understanding of what is going on for your loved ones with an eating disorder and hopefully a bit on thinking psycholgically about your role as a carer and how to look after your needs too. I guess I’ve been struck by carers I’ve met and in the media recently feeling they don’t have a good enough understanding of how an eating disorder works, which frustrates me because I feel it they are understandeable disorders and it should be possible for professionals to help carers understand them well enough. I guess I see understanding how the eating disorder functions as one of the key ingredients in helping someone overcome it.

3. A holistic psychological understanding of eating disorders
Section 1:
A holistic psychological understanding of eating disorders
So I am going to fire through three main concepts which are the building blocks for understanding an eating disorder in 25 minutes if I can and then we can discuss if any of that makes sense to you…. don’t worry if you miss things there’s a handout with a bit more detail.

4. Concept 1: Universal Core Needs
Maslow (1962)
A hierarchy of physical & psychological needs
Met needs = wellbeing & quality of life
direct relationship
Tay & Diener (2011) n=60,865 – huge study

5. Concept 1: Core Needs Framework
We all need a minimum of these needs to have reasonable physical and psychological health and wellbeing
Eating disorders lead to distorted prioritising of the needs eg. need to try and feel in control/competent and activity are prioritised, but at the expense of almost complete neglect of the need for emotional nurturance or nutrition

6. Concept 2: Feelings as indicators of needs
By ‘feelings’ I mean
emotional feelings eg. anxiety
physical feelings eg. pain
Oately & Johnson-Laird (2011) Communicative Theory of Emotions
“signals that set body and mind into modes that have been shaped by evolution and individual experience to prompt a person towards certain types of action”
A rapid response signalling system
before thoughts
drive action
May be accurate or may be misleading ie. meeting needs or not
So if this rapid response system works well you semi-automatically act on feelings and have an outcome which meets need
But if feelings have become misleading, you may instinctively act in a way that doesn’t meet your needs
A really basic example of this:
going to cross the road
glance each way
see a car moving quickly
fear of being injured/death – almost certainly completely sub-conscious
makes you stop and wait semi-automatically
So feeling of fear > drive to meet need to be physically safe > response + don’t walk out

7. Concept 2: Feelings as indicators of needs
Feelings indicating met needs:
happy, calm, confident, secure, excited
satisfied, relaxed, warm, strong, energetic
Feelings indicating unmet needs:
anxiety, anger, fear, disgust, shame
hunger, pain, cold, tense, weak
Feelings system can get mis-calibrated and become misleading
Eg. hunger - anticipate pleasure - motivates eating – satisfaction
Eg. hunger - anticipate anxiety/guilt - motivate avoidance of eating - reduced anxiety

8. Concept 2: Feelings as indicators of needs
Needs Met Needs Needs Unmet
Feelings
system well calibrated system mis-calibrated
Thoughts
Response/Action
So to summarise…..
I now that’s a lot of heavy psychology, somewhat over-simplified, but does that make some sense?
So obviously these are general psychological concepts and apply to everyone – me you and people with mental health problems – so I will come back to carers thinkings about their needs, because this is juts as important if you want to help your loved one – in fact it’s essential – as well as thinking about their needs.

9. Concept 3: Psychological Modes
Putting this all together as a way of understanding how a person functions:
Needs + feelings + thoughts + action = psychological mode
Different sides of the self or different aspects of someone’s personality
We need different aspects to ourselves because in different situations we need to act in different ways to meet our needs
Eg. if someone comes in through the door and asks us if the room temperature is OK, I’m going to need a different mode to respond to that than if someone bursts in wielding a machete!
So now I’m going to run through descriptions of 6 key psychological modes that happen in people with eating disorders – that are hopefully familiar in some ways

10. Vulnerable mode
Experiencing vulnerable emotional and physical feelings
Feeling insecure, unsettled, unsafe, anxious, vulnerable
Feeling tired, weak, tense, hungry
Feeling guilty, ashamed, inadequate
Function: to make person aware of their unmet needs
Without awareness, can’t meet needs
Person with an eating disorder is ashamed of being vulnerable and needing something
Desperately seeks to control or detach from this part of themselves
Making them very difficult to reach emotionally

11. Vulnerable Mode
This is the most important mode – it’s the emotional core of the eating disorder

12. Critical-Demanding mode
A key ‘coping’ mode in AN
It criticises the person for being vulnerable, having needs
You’re weak, pathetic, greedy, disgusting, stupid etc
You’re not good enough, You don’t deserve it
It’s function is to motivate the patient to ‘deal with’ vulnerable feelings themselves and keep them hidden from others
You need to try harder
Get a grip – don’t be so irrational

13. Critical-Demanding mode

14. Over-Controller mode The central coping mode in AN
Function is to control or avoid vulnerable feelings
Involves obsessive planning, perfectionism, details
Attempt to get things ‘right’ and avoid criticism or other risks
Hypervigilance to potential threat or problems
What if……. Just in case…….
Operates in three realms
Intra-personal: control of self and internal state eg. restrictive eating
Inter-personal: control of others eg. pushing others to collude with their obsessionality to avoid distressing them
Environmental: control of environment: eg. excessive cleaning/tidying

15. Over-Controller mode
This drawing reflects one aspect of the over-controller mode to do with worrying – so worrying is a way of thinking to try and consciously deal with concerns and fears, that can become an excessive way of trying to control feelings and reduce anxiety and fear, but ends up with fears juts coming around again having not actually been dealt with.

16. Detached Avoidant Mode
Essentially an avoidance mode, avoiding awareness of vulnerability and uncomfortable feelings
Function is to detach, numb, self-soothe, avoid getting distressed
Directly through social withdrawal
Indireclty through being inconspicuous/small/quiet
Or internally through blocking out or cutting off from negative feelings
starvation, repetitive behaviours and binging can all give feelings numbness/detachment
Mentally avoiding/ignoring/denying vulnerable feelings when with others – pretending OK – ‘nothing to see here!’
If I was drawing this it would be like a big bubble around someone – or a big wall with vulnerable part hiding behind and a smiley face on the outside

17. Angry Misunderstood Mode
Arises usually from feelings of desperation
Function is to force others to respond to their distress (vulnerable mode)and make them feel better, or, to make them back off
Feels misunderstood and mistreated
Critical and demanding of others – so often leads to angry battles with others
Different from other modes as can make others feel responsible for their problems
If help is offered, often rejected as not ‘right’ or not good enough
Usually followed by shame and self-criticism

18. Excessive mode
In people with binging problems – the side of them that can’t control their hunger after restricting and over-eats excessively
Function as a basic ‘gut response’ to unmet need for nutrition
Can feel rewarding, comforting initially (although this often denied)
Then feels out-of-control, guilty and ashamed
It is the most healthy of the coping modes as in someone who is underweight or restricting eating – this is exactly how your feelings signalling system should work!
In people with purely restrictive eating restricting eating disorders There is intense fear they will become excessive unless they are vigilant and self-controlled
So this is a ‘virtual’ mode but one they are terrified off
This can operate in other ways too – for example in excessive alcohol use

19. Summary – psychological understanding of eating disorders
Needs + feelings + thoughts + action = psychological mode
The ‘cast’ of different parts of the personalities of people with eating disorders:
Vulnerable side
Demanding self-critical side
Over-controlling side
Detached –avoidant side
Angry-misunderstood side
Excessive side

20. Break for discussion

21. Section 2: Stuckness versus change
Providing care and caring for yourself

22. Stuckness v change: ‘vicious’ cycle or ‘virtuous’ cycle

23. ‘Vicious’ Cycles and stuckness
Going to describe some vicious cycles that people with ED’s get stuck in and that keep the eating disorder going
Purpose: is to help you understand how people get stuck
often a powerful sense of reward from their eating disorder
especially through it making them feel safe and good enough in the short-term
or a powerful sense of shame, making them unable to reach out for help
or so detached from how feeling that just carry on in ‘auto-pilot’

24. The ‘Super-Hero’ maintenance cycle

25. The ‘Super-Hero’ vicious cycle
This is central to the reward of losing weight - usually more present in earlier stages of problems
Experience of being emotionally self-sufficient, conquering vulnerable feelings, numbing themselves, feeling in control
Over-controller mode is active: perfectionistic striving for high standards giving sense of competence, virtuousness, pride even superiority
Having ‘special powers’ and not needing what everyone else does
In relation to eating, OCM leads to self-control, self-denial and rewarding achievement of weight loss
Everyone else worried but they often feel invulnerable, energised, tough
But ultimately can’t sustain losing weight as deprivation of needs increases – tired, weak, cold, socially isolated, lonely

26. The ‘Dam-Builder’ vicious cycle
This is the key avoidant vicious cycle
The Detached Avoidant Mode is in charge, with feelings being suppressed and avoided, giving the impression of being ‘fine’ on the surface
The wall of the dam holds back the churning waters of distressing feelings, fears and unmet needs (Vulnerable mode)- which feels safer, fear of being overwhelmed
There is constant work to block things out and keep the wall strong, to stay in control of feelings (Over-controller mode) & to keep feelings and needs hidden
It becomes a lonely job, isolated from others, not able to show their real self, unable to open up and connect with others – but, feeling protected from shame and criticism

27. The ‘Dam-Builder’ vicious cycle

28. The ‘Dictator’ vicious cycle

29. The ‘Dictator’ vicious cycle
The key toxic maintenance cycle in AN
The Demanding Critical mode & Over-controller modes are dominating
Initially welcomed, like a dictator, arising amid social chaos and threat, offering order and safety
Follow the rules, work hard, do the ‘right’ thing (OCM) and you will feel safer (VM) – early stage of a ‘benign dictatorship’
Increasingly rigid more complex rules, harder to get it ‘right’
Increasingly punitive ‘secret police’ – the Critical mode becomes self-punishing for any perceived ‘mistakes’ eg. 10 calories too much
Ultimately submission to rules & self-punishment, accepting the suffering and feeling too afraid to make a bid for ‘freedom’ (change & recovery)
Often experienced by patients as like an internal ‘anorexic voice’ that tells them what to do and criticises or punishes them if they get it wrong

30. Push-Pull Vicious Cycle
The main maintenance cycle that leads to conflict in relationship with others
Key modes active modes are:
the intensely felt underlying Vulnerable Mode, when feeling desperate, agitated, lost or hopeless
This may be directly expressed to others or just communicated by withdrawal or expressions of distress
The vulnerable mode is displayed in the appearance of the body of someone who is underweight, communicating to others (usually unconsciously) that they’re not OK
the angry-misunderstood mode perceiving that others are not understanding them properly, doing the wrong things and making them feel worse
consciously or unconsciously may drive desire to punish others in the moment by criticising and rejecting them, or simply to push them away
The reward is that it can feel powerful to push someone away or punish them, and this can distract from the vulnerable desperate feelings
But usually guilt & shame about being angry follow on quickly after

31. Moving from Stuckness to Change
So to summarise – people get stuck in eating disorders because the vicious cycles of unhealthy coping modes:
give them reward short-term reward
but in long-term reinforce their fears & don’t truly meet their needs
make it difficult to make close open relationships with others
So how can people move from stuckness to change
they must have or develop enough readiness & motivation for change
this may happen on their own
or it may happen with therapists or others helping them to understand and recognise the risks and problems of not changing
BUT if someone is not ready to change they will strongly resist being pushed too hard or others trying to take control – terrified of having their coping mechanisms taken away
This is why admission to hospital usually feels like such a threat for people with eating disorders

32. 8 key ingredients for change
2 phases of treatment and recovery
Phase 1 reaching the tipping point of readiness to change:
sufficient engagement with professionals and/or experts by lived experience of eating disorders and/or someone caring they trust
gaining self-knowledge and understanding of the origins and function of their illness
recognising the toxicity of self-criticism and self- deprivation
making a commitment to change & owning the responsibility for that
These came from a qualitative research study we did which I talked about at the last SEDIG conference – which explored some of the reasons why some people changed with treatment and others didn’t…

33. 8 key ingredients for change
Phase 2 the work of achieving change:
accepting ‘failing’ or set-backs as a crucial and healthy part of change & learning
opening up emotionally, to develop trusting & accepting relationships
perseverance with behavioural change reflecting self-care, including weight gain if underweight
developing self-acceptance, self-compassion and healthy self-care

34. Carers role in change
This will sound hopelessly simplistic and non-specific, but I truly believe it is the most important thing a carer (professional or relative) can do to help someone
To empathise with their vulnerable feelings and their emotional needs
To try to reach their vulnerable side:
To acknowledge and recognise that side of them
To show unconditional love and care for them
To be accepting of their flaws and weaknesses – perceived or real
This can be an extremely difficult task because the way an eating disorder works is to keep vulnerabilities:
hidden from others
controlled
suppressed

35. Carers role in change
Relatives or partners may be the best people to reach and support some people with an eating disorder
However, the emotional intensity of relationships with partners or relatives can often make this too difficult for the person with an eating disorder to let them help because:
They are too ashamed of their problem to allow those close to them to get involved
They are too fearful of those close to them trying to take control of their eating
They are too fearful of being misunderstood
This is why conflict can so often arise with carers who are trying so hard to help
There is a risk of getting caught up in a ‘battle’ if the person with the eating disorder is not ready to accept your help
In my view the only time the battle needs to be engaged in is when there are clear acute medical risks
Then it should be the professionals who engage in that battle with the sufferer not the carers – we will discus medical risks later

36. Carers role: to connect with vulnerable mode and support patient to develop healthy mode

37. Carers Self-care
You will be no use as a carer, to meet your loved-ones needs, unless you prioritise looking after your own needs
Eating disorders are ‘designed’ to keep other people at an emotional distance – it is very difficult to help someone who does not want to be helped
Severe and enduring eating disorders are fundamentally self-depriving disorders, where sufferers have huge unmet needs
For other people to meet these needs – therapists or carers – must be very good at meeting their own needs to have enough to give to people who are so lacking in what they need
Do not keep battling against resistance
empathise with the underlying vulnerability
accept you can’t ‘fix it’ however much you want to
be ready to join in as a cheer leader and supporter when they are ready for your help

38. Carers Core Needs: how well are you getting yours met?
So just coming back to this slide from the start – I want you just to pause for a moment and think about how well you are getting your needs met? And if you’re not – what can you do to try and change that?

39. Break for discussion
Imagery exercise if time?

40. The physical risks of eating disorders
Section 3:
The physical risks of eating disorders

41. Key medical risk factors
Low BMI
Rate of weight loss
Vomiting
Laxative abuse
Drug or alcohol misuse
Diabetes
Pregnancy (primarily risk to unborn child)
Denial of risk and / or avoidance of medical monitoring
Complex psychiatric presentation
Medication or comorbid medical conditions with effects on cardiac, renal, hepatic function or electrolyte levels
See handout guidance sheet for screening for risk

42. Mortality in Eating Disorders
Anorexia Nervosa “Highest mortality rate of any psychiatric disorder”
true but misleading regarding actual risk
The increased risk of premature death is modest amongst the average AN patient and minimally increased in BN/BED (Keshaviha et al. 2014; Fichter & Quadflieg, 2016)
Mortality risk only become substantially higher amongst AN patients when BMI’s drop below 11.5 (Rosling et al. 2011)
Crude premature mortality rates in AN populations in general around 4% mortality
Around 30-40% cause is suicide not starvation-related

43. Starvation and complications in AN
Multi-system
Homeostatic adaptation to starvation
‘normal’ for abnormal circumstances
Use of energy stores
Glycogen
Fat
Shut down non-essential systems
Slow down essential systems as far as possible
‘Autophagy’ – only likely to be truly dangerous at this stage

44. Physical complications in AN
Key Short-Term Risks:
Collapse (Hypotension or Hypoglycaemia)
Immuno-compromise (Neutropenia) leading to difficulty fighting infections
Abnormal heart rhythm
Re-feeding syndrome ( ↓Phosphate)
Key Long-Term risks:
Gastro-intestinal complications
Osteoporotic kyphosis
Myocardial Infarction or Cardiac Arrest

45. Medical Risk Outcomes Study
Study of the high risk early treatment period of medical stabilisation & re-feeding (Davies et al )
BMI<13 on entering service (or rapid weight loss)
first 60 days of treatment
n=17 community sub-sample
71% of patients did not show any significant objective risk factors
Of the 5 patients who had a significant objective risk factor, these were all short-term and resolved within 60 days of treatment
Medical complications in AN are not nearly as common as people believe

46. CONCLUSIONS
Eating disorders are understandable as dysfunctional ways of coping with vulnerable feelings
Empathising and caring for the vulnerable side of someone with an eating disorder, even when they are hiding this or blocking it out, may be useful
Eating disorders can cause significant physical risks, but these are not as dangerous or as frequent as is commonly believed
As carers, you can only look after your loved-ones needs if you are good at looking after your own needs
Thanks for listening!

47. Break for discussion