Caring for someone with an (severe or enduring) eating disorder

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

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 • 25mins & 15 mins discussion • The physical risks of eating disorders – evidence & experience • 20mins & 15 mins discussion • Happy to share my slides with anyone who wants them

3. Section 1: A holistic psychological understandingof eating disorders

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

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

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

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

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

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!’

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

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

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?

39. Break for discussion • Imagery exercise if time?

40. 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. 2017) • 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