November 2014

Eating Disorders; Eating Disorders; recovery is possible, but recovery is possible, but

it’s bloody hard work.it’s bloody hard work.

Nicola WareNicola Ware

November 2014November 2014

What is an Eating Disorder? What is an Eating Disorder?

• Coping mechanism• Helps a person deal with the day• Makes the person feel “safe”• Addiction• Can be overcome, but why would you?• A LOT of effort, pain and hurt• A lot of visible emotion (usually)• Is there any point?

What they said….What they said….

• “If you eat you will feel so much better”• “Look at the state of you…”• “No one will want you looking like that”• “You’re pissing your life away in the wind.”• “If you got better you would be so much

happier”• “Why can’t you just eat?”• “Why are you doing this to us?”

What they didn’t say….(until London)What they didn’t say….(until London)

• “If you eat you will feel rubbish for a long time”• “It takes a long time to feel better”• “It is ok to ask for help”• “How do you feel about it?”• “We can help with your feelings about you as well as your

feelings about food”• “Of course you can’t just eat. If you could you wouldn’t be

ill”• “You might not think that you feel like everyone else, but

how do you know what everyone else feels like????”• It is ok to be different/ scared/ sad/ happy/ miserable/

moody…. • “I don’t blame you for feeling like that”• “That must be so hard for you”• Learn to accept “good enough”

Key themes?Key themes?

– Control – yes– Abuse – sadly yes– Dieting – to a point– To be thin – to a point– To feel better – most definitely (self-medicating)– A focus; a distraction from the real issue– If I achieve the thinness I always wanted, all my other

problems will just melt away (media influence; fades with age and experience)

– Emotional, not logical. Reasoning doesn’t work– Identity – can I give it up? Who am I without it?– Perfectionism – trying to be the best– Internet – wasn’t around in my time. I imagine it is a

massive obstacle now.

Why me?Why me?

• The million dollar question!• Inability to honestly communicate about my own fears and

insecurities• Not feeling listened to• Not allowed to just “be” – pushy mother of sorts• Abuse• Not “fitting in” – bullied at school on a subconscious level• Feeling lonely• Feeling out of control• Doing things to please others that actually scared me – some

social, some anti-social• Attention-needing (starts by wanting to be attractive… learns that

it attracts all sorts of attention. But not the right attention. I want you to listen, not judge… It also served as a distraction from my real problems)

• Fear• Food was always the enemy… until controlling it became my friend• It could’ve been drink or drugs or exercise or stamp collecting…..

The DiagnosisThe Diagnosis

• Initial diagnosis of Anorexia Nervosa• Good Prognosis – something I didn’t want to hear at that

time, because then the attention stops. Then I am meant to be ok but just because I look ok doesn’t mean I feel ok. And how am I meant to communicate that then????

• Struggled with treatment for a number of reasons• Moved abroad• Came back to be tube fed several times• Asked to be tube fed so I could continue with my life,

knowing I couldn’t eat but not wanting to be ill• London diagnosis of “multi-impulsive eating disordered

behaviour”• A relief! Timing? Diagnosis? • Started in 1993… correct diagnosis given

in 2002.

Getting treatment.Getting treatment.

• Why couldn’t I do it on my own?• Have you ever broken a bone? Did you feel bad for getting

a pot on it?• You might feel bad if you kept ragging it off and going back

for another…. Until you realised you kept ragging it off because it had broken glass in it.

• Or maybe it had to come off because you simply weren’t ready to put up with life in plaster. But it never got better. You had to go back one day and have it set it pot.

• Treatment is partly about the service and partly about timing.

• REALLY had to push for it• Looking bad I would have stood firmer against the doctors

in the early days as it was bad treatment

Recovery; when did it start? Recovery; when did it start? How did it start? Why did it start?How did it start? Why did it start?

– Sort of started after one year– Had a couple of good goes at it in Leeds, but

no real therapy to back it up. – Tube feeding at times was the only option –

came to rely on it– Begged the service in London to take me– Had to concede defeat and accept “the

programme”– Set myself up for the long haul – gave up work– “Like doing A Levels and taking the exam half

way through to get it over with, even though I knew I probably wouldn’t do as well as I would if I did another year’s study”.

Recovery; How did it continue?Recovery; How did it continue?

– 1 to 2 year follow up– Travel to London every week for a year– STICK to the plan– Even if clubbing I would set my alarm and get up and have

breakfast at 7am– Gradually got used to food and it became less important– Different relationships helped put food into the background– Splitting up in relationships was tremendously difficult and

sometimes I would restrict– Found myself going to the doctors more – replacement parent?

(Much to the ridicule of my mother)– A few sessions of therapy. Not sure they did anything other

than allow me to feel cared for and “safe”. But I was asking for help

– Periods of high anxiety but learning to control it

Recovery in “real” lifeRecovery in “real” life

– Eating with and cooking for partner over time just became normal

– Getting pregnant changed everything. I became much kinder to myself

– Having a baby meant I wouldn’t take risks with myself. Won’t skip a meal; want to set a good example

– Yes I still look in the mirror and wish my tummy was flat. I weigh myself from time to time. I choose healthy options if I go out to eat where possible..

– However I eat 3 meals a day. And copious amounts of butter (need to sort that!) And chocolate in moderation

– I do still feel my life would be better if I lost half a stone…

– … find me a woman that doesn’t!

Life without “Anorexia”Life without “Anorexia”

• Still shocked (disappointed) when I see myself in the mirror

• Still want to feel the control but cant be bothered

• Have to work hard not to be the person that doesn’t eat (not to fill the expectation; sometimes easier not to eat that to eat and have everyone comment)

• New jobs, new people, new start. But ONLY AFTER treatment.

Getting better doesn’t make life lovely….Getting better doesn’t make life lovely….

• Life isn’t suddenly rosy• Things don’t get easier• If anything life gets harder for the first

few years• Getting better hurts• Getting better brings up all sorts of

hidden emotions that have to be faced• The family has to accept a different

“person”

How can you help?How can you help?

• Back off. No seriously, just back off• Let the person find themselves. The ED has to be about them and no one else• Don’t tell them they’re ugly. It doesn’t help• Don’t tell them they are a waste of space. It doesn’t help• Don’t be embarrassed of them. It doesn’t help• Do encourage conversation. NOT about food• Do talk about feelings. And accept their feelings Remember everything is about

perspective.• Do laugh. It’s ok. Really• Do offer love. Do offer attention to emotion and feeling. • Do not offer attention to food.• Do talk about your own feelings. • Do carry on with life… but stop any unsafe activities so the sufferer doesn’t think

“life goes on”. • Do talk about health, not weight. But not daily. Only where appropriate• Love your daughter as you always have.• Don’t talk about “getting back to normal.” whatever you thought that was; it’s the

last place she wants to be• Do be the support for when it’s hard, when she’s sad. You might not agree with the

emotion but it’s her emotion and she should be free to have it.• Do not be blackmailed by food. Food and feelings are two entirely separate

matters.• Accept you cannot make her better. She will do it if she wants to, feels ready to go

through the hell of recovery and has support beyond you.• Don’t put your life on hold, but don’t give up hope.

How can you help?How can you help?• Remember, recovery is hell• Albeit a relief to find someone who understands if you get a good in patient

service, it is nothing short of hell• Living with folk you don’t particularly like• Living with folk who have stupid habits (even fellow patients can be intolerant; I

could tell you some stories!)• Your daughter is doing what hurts, sometimes 6 times a day and having to deal

with the emotion that comes with that• She has probably lost her freedom too if she is an inpatient• No matter how simple “just eating” may be to you, your daughter is not you and

feels very different to you about food and probably about a million other opinions you have too. SHE IS NOT YOU. Don’t expect her to react to situations as you do

• Always be respectful of the pain she is going through. • Cut her some slack in respect of the sometimes hurtful things she may say• Just be there. Always always be there. • And shut up. Sometimes just shut up. Stop speaking for her. Stop telling others

what she feels. Let her say it. You just need to listen.• And don’t be so defensive. She’s not having a go at you, she might be telling you

how she feels.• It might be your fault indirectly. It might be a reaction to how you deal with life but

she needs to learn to work differently to you and communicate. You have not made her ill and you cannot make her better.

• “The road to hell is paved with good intentions”`

Getting better is worth it.Getting better is worth it.

• Questions?