What Helps – Support for Eating Disorders

This is an interesting piece of research that requires lots of people to be involved, so as to ensure the results are relevant to as many people as possible. If you have recovered from an eating disorder, or you currently struggle with an eating disorder then please take a few moments to fill this out. If you know someone with an eating disorder then please pass this on to them so that they can put their thoughts down. It’s all anon and no identifying personal information is required.

What helps - Support for Eating Disorders

What this project aims to do is find out what people living with eating disorders find helpful in terms of treatment and support from health services, therapy, family and friends.

The research on eating disorder support tends to be based on clinical measurements, external, and often visible and easily measurable symptoms, and not on how people themselves feel about the support they have received and the impact it has had on their lives. This project aims to focus exclusively on the experience of those living with, recovering from and recovered from eating disorders, specifically on how they experienced treatment and support and what they found to be most helpful.

To gather these experiences, a survey has been created and can be found here. It is open to anyone who has something to say about the support and treatment they have experienced relating to their eating disorder. Not all questions…

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What Helps – Support for Eating Disorders

(TWsuicide) An unknown to many but a dearly loved one to some…

On Saturday, whilst a very distressed man stood atop a very high building, people below shouted up encouragement. I think it’s safe to say that a lot of us would assume that the shouts of encouragement would be to come down, that it’d be okay, to not do it, that people cared, all of those things that might help because in a desperate situation you try everything in order to save a life. Yeah, no. The encouragement was to jump. The people down below had their phones out filming and taking photos of events as they happened which they then uploaded onto social media sites for the world to see. On top of all of this, many also jeered and shouted encouragement along the lines of, ‘Go on – do it, jump!’ Apparently, as reported by a BBC news article there were youngsters running around trying to get a ‘better view’. It’s thought that this went on for around an hour or so, people continued to behave in this way for an hour. The police arrived and tried to talk to the man and get him to safety but unfortunately the man fell and was pronounced dead at the scene.

There are several parts to this and I think it’s important to recognise them separately, because they are all important.

Firstly, the man who lost his life. Suicide is always horrifically sad. People often say that suicide is a selfish act and it is, but it also couldn’t be further from selfish. If someone were thinking completely rationally, they were able to look at things from every possible angle and their mind was completely free from any illness and they knew that by taking their own life they’d cause unimaginable pain to those around them then that could probably be called selfish. However, when someone is mentally unwell, irrational, frightened, vulnerable, uncertain with a mind that is trying to murder you in a world that doesn’t understand and a belief that everyone would be better off without you..? If someone is in that kind of place, I’d question whether the capacity to be selfish is even possible, because at that point everything is muddled and mixed. Someone can seem completely rational, will be assessed as having awareness, insight and capacity, but what someone may seem isn’t always what someone is. We don’t know anything about his life, his background, his current situation, his family, his medical circumstances or any support he may or may not have been receiving. We know nothing, absolutely nothing, about him as a person, but what we do know, what was undeniably clear, was that this man was in desperate need of support and kindness; humanity failed him big time. In that moment of complete hopelessness and dealing with whatever horror was torturing his mind, he was met with a group of people who stood below telling him he should jump, and those words probably reaffirmed all of the horrible beliefs that had led him to that point. Perhaps a little human decency and kindness could have made a massive difference to how things ended for this gentleman.

Secondly, what? Just, what? I struggle to understand humans at the best of times, but to witness a visibly distressed man stand on the edge of a building and think that the best thing they could do is to pull out their phone and capture the event, whilst shouting ‘Go on – Do it, Jump!’..?! How removed from humanity do you need to be to act like that? How horribly callous, unfeeling, heartless and cruel must someone be to think that that kind of behaviour is acceptable? In the past, people would attend public executions but we’ve moved on since then, times have changed and if someone was being publically executed it was usually due to a crime – or what was deemed to be a crime during that period of time. This wasn’t a public execution, nor do we live in a time when causing harm to others is acceptable. This is 2015, not 1425, we have an awful lot more knowledge than we did then, we have come a long way in terms of mental health awareness and yet this unacceptable and barbaric event took place.

Life isn’t a DVD film or a video game with a rewind button, a restart switch or reset setting; there is no replay, no second chance, no ‘whoops, that was a mistake, better try another way’. Is it that people are disconnected to reality, to humanity, and so these things are seen as a laugh, a bit of fun? That it doesn’t matter? That a life doesn’t matter? If they are an unknown does that mean that empathy and kindness don’t exist? The jeering and goading, the filming of a desperate scene, the anticipation of waiting for someone to fall; what on earth is happening to society?

So many people judge situations that they don’t understand and make the typical ignorant comments of, ‘what have you got to be depressed about?’, ‘she’s proper crazy’, ‘he just needs to sort it out, I’d never end up like that’… Some become irritated by the fact that someone has held up their travel plans or delayed their daily schedule when in reality, instead of annoyance, perhaps gratitude would be a better response. The person causing the delay must be in such a horrific place, be grateful that your mind is not in that place. Of course, for those that rant and rave about how they’d never have a ‘mental problem’ or those that believe that no one in their family would become ‘one of them’, they don’t believe they have anything to be grateful for, because ‘those people’ are different.

The man who fell on Saturday was an important individual and whilst the people on the ground didn’t know him and some of them didn’t give a flying monkeys about his safety, the reality is that he was a part of a family, he was a son and perhaps he was a brother, an uncle, a dad, a grandson, a husband. Perhaps he was a member of a sports team, a social club, a staff team, a member of a voluntary group. He may have had some input from support services, he will have had a GP and perhaps other medical professionals. Friendship groups, those he went to school with, those he went to college or university with, those he bumps in to occasionally around his home town. Those people watching this awful tragedy as if it were part of an entertainment show probably didn’t consider any of those possibilities. Had they of looked up and seen a man and thought, ‘I could know him’, then I think they’d have reacted differently. Even the toughest most idiotic human will have something that would cause them to crumble and watching losing someone they love is usually pretty high up on the list. Had they have thought about the fact that that man could be their brother, their son, their dad, their uncle, their boyfriend or their friend, would they have behaved in the same way? If they were in the man’s position, would they want people to treat them the way that they treated him?

I wouldn’t wish the agonising torture that is mental illness on anyone, but I do wish that some people could live with it for a day, just a single day. Those that proclaim that they’d never have that, they’d never be in that position, that people are weak and over sensitive, that it’s easy to get over and pull yourself together and all of the other ridiculously stupid statements that are made far too regularly. If they could know the pain, if they could feel the confusion, if they had a sense of how overwhelmingly bleak and hopeless things can feel, if they could live for a day with a mind that is not their own and an illness that hell bent on destroying you, maybe they’d understand. Maybe it would mean that they wouldn’t make harsh judgements or be as insensitive towards those that are in desperate need of compassion. When everything terrifies you and you feel that lost that you’ve ended up on top of a building..? This man needed kindness, hope, care, love, support, a safety net, a chance, security and protection. That is what this man should have been given.

To those who chanted for him to jump, to those who thought it was a form of entertainment, to those who ran around to get a better view, to those who gave zero thought to the welfare of this man or his family and to those who shared photos and videos on social media… I really hope you realise that actions have consequences, kindness costs nothing but ignorance costs lives. It is illegal to assist someone in their own suicide, but that is exactly what has been done here. I’m sure some will say that it was his choice to fall, but if he was battling against his own mind, who knows what thoughts were racing around, what beliefs he had or what his take on things was. Those people may as well have been standing on the roof with him because regardless of physical contact, he was pushed, partly by whatever demons he was battling but also partly due to the abhorrence of other people. Maybe they won’t sleep for a while, perhaps they’ll develop PTSD from seeing something so upsetting, perhaps they’ll be charged or perhaps they’ll use this experience to change their life and educate themselves in psychiatry and go on to save others… Perhaps they’ll continue to think their behaviour is perfectly acceptable and they’ve done nothing wrong because ‘whatevs’. The first group of people will have at least looked at themselves, the second group have not only remained ignorant but also ignored the chance to educate themselves which makes them stupidly ignorant. To that second group of people, one day that could be you, or your child, your parent, your best friend, your sibling, your partner… What happens if it is your child? What happens if it is someone close to you? Will you continue to ignore that it’s a genuine issue? Will you stand there, as you were, and cheer, as you did, for them to jump to their death? Or will you be crying out for support for them, begging services to save them, pleading with them not to jump and to come down because you can work things out and you love them..? That is the reality. This is the reality.

I thought the chorus of P!nks song ‘Dear Mr President’ was pretty fitting for those involved;

How do you sleep while the rest of us cry?

How do you dream when a mother has no chance to say goodbye?

How do you walk with your head held high?

Can you even look me in the eye?

And tell me why?

This is a heart-breaking situation and my thoughts go out to his family, friends, police officers and others who tried to help and also the people who happened to be in the area at the time, genuinely unaware of what was happening, and witnessed such a tragic incident. I’ve included the link to a BBC article because I’ve mentioned some of the things mentioned within that article, but I’ve not added any of the images associated with Saturday afternoon because it just doesn’t feel right. Actually, I guess writing this feels wrong in a way, but after reading various things regarding the behaviour of some people on that day, and also having read many similar articles over the years, I felt it needed to be said.

I’ve lost several friends to suicide, I don’t believe they were being selfish but I wish they’d survived. I wish they’d have had support at that exact moment, I wish they’d have felt a smidgeon of hope, I wish they’d not felt so lost and desperate, I wish their life hadn’t been extinguished whilst their light was so bright, even if they couldn’t see their own brightness for themselves. I wish I could have done more, I wish I’d have spoken to them more, replied quicker, not lost battery on my phone… I think that’s why people say that suicide is selfish; the pain for those left behind is painfully crushing, the questions you ask of yourself and others are never ending, the agonisingly excruciating heart-break of wanting them back, because all you want is for them to come back and for it all to be a bad dream, because you miss them and you never stop missing them because they’ve left a hole in your irreparable hole in your heart. I remember feeling angry because they knew they were loved, they knew they were wanted, why had they left when they knew all of this?! I then felt guilty for feeling angry because I understand it from the other side too and because I know that in that moment what you know and what you feel aren’t the same thing, feelings are more powerful than what you know sometimes…

To anyone that is struggling, feeling suicidal or thinking that the world would be better off without you; stop, breathe and seek support. Your mind may be telling you all manner of horrible things, it might feel hopelessly impossible to imagine anything other than where you are right now, there may have been upset with family, an unsettling life event or an overwhelming feeling of desperation… Those feelings are real, they are painful and they are your reality right now; but they won’t always be and I know you will probably just roll your eyes at that statement, but things can change. Please reach out to someone, please speak to someone, please find somewhere safe and please try to ignore the voice of the illness and seek out those little pieces of true reality that isn’t clouded by depression. Speak to a parent, speak to a teacher, speak to a work colleague or contact the Samaritans. Cuddle up with a pet, watch a comforting DVD, do some colouring in or reading. Take one day at a time and if you can’t think as far ahead as a day, take an hour, take a minute, but hold on. Seek support from professionals, speak to your GP, go to your nearest A&E department – do anything that gives you the safety you need at that time. No matter how bleak things seem or how impossible everything feels, please know that you are important, you are valuable, you are wanted and there are people who love you. (Sometimes those that love us might not understand which can make things feel cold, but that doesn’t mean they do not love us or care about us. It just means they need a little help so that they can understand.) I’ve known people who have felt so full of bleakness that they felt their only option was to eradicate themselves, they reached out, got the support they needed and they are now healthy, happy adults that enjoy life and are truly grateful that they held on. It’s impossible to believe that’s possible when you’re so far down that deep hole, but you can climb out, with support and patience, people can climb out.

I suppose for those in the hole it’s a case of holding on to that teeny tiny piece of possible hope that maybe we can be one of those who make that climb and emerge from the hole, grateful for every beat our heart takes because it means we are alive; despite everything, we survived.

Samaritans (UK) – 08457 90 90 90

Samaritans – http://www.samaritans.org/how-we-can-help-you/contact-us

NHS page & other links – http://www.nhs.uk/Conditions/Suicide/Pages/Getting-help.aspx

Support Line info – http://supportline.org.uk/problems/suicide.php

PAPYRUS (Young people) – https://www.papyrus-uk.org/

Mind & other links – http://www.mind.org.uk/information-support/types-of-mental-health-problems/suicidal-feelings/useful-contacts/#.VQjAhemzVMs

Suicide Prevention Life Line (49 states) – http://www.suicidepreventionlifeline.org/

(TWsuicide) An unknown to many but a dearly loved one to some…

‘They have to be ready to change..’

‘They have to want to change, they have to be ready to change, no one can make someone recover, we can’t save everyone, it has to come from them and if they aren’t willing to cooperate then we cannot help them.’

Noncompliant. Difficult. Chronic. Treatment resistant. Non cooperative. Unwilling.

If someone wants something then they reach for it don’t they? If someone wants something then they make decisions which are reflected in their choices, right? Well, yes. Yes, in many different areas of life that is what happens but with anorexia that isn’t how it works; I wish it were!!

Whilst treatment providers wait for people to ‘choose’ recovery, be ‘motivated’ to make changes, ‘comply’ with treatment and ‘cooperate’ with a programme, those people become more and more unwell. Of course this means that the illness has more time to infiltrate a mind, destroy a body and suck all hope from a soul. It also, of course, means that people need a much higher and more intensive level of care and support. This in turn not only causes a greater deal of pain and torment for all involved, but it also costs a whole lot more money. It’s been widely reported that the NHS doesn’t have the money it needs to provide what it needs to provide and yet, really, money is being wasted by losing the opportunity for early intervention. Early intervention can make the difference between someone recovering with a low risk of relapse or spending years being treated with a very bleak outlook as a ‘chronic’ sufferer.

Anorexia isn’t a choice and whilst many people believe that not eating is a decision that is made by the person, it really doesn’t work like that. It isn’t that I decide not to eat, it isn’t that I’m not hungry, it isn’t that I don’t need food or want it; it’s that I can’t. Imagine being locked inside of your body, the things you think are muddled beyond any kind of possible comprehension. When the things you feel and the stuff you want to say is blocked up and stuck, you open your mouth to say something but the words spoken aren’t the words you’d needed to speak.

‘Would you like some dinner, pasta or rice..?’ Such a simple question and yet the thought process that follows that question is like some impossible math equation that involves brackets, letters and weird shapes that you’ve never seen before and have absolutely no idea what they mean!! When anorexia is loud and I cannot make sense of things that question may as well be ‘Would you like x4+bx3+cx2+dx+e and (x-a)(x-b)(x-g)(x-d) or {-D±Ö(D2+4C3/27)}/2 perhaps 8pqr x+(p2+q2+r2)2..?’ Add in the deafening noise from your own thoughts rushing around your mind, bumping into one another causing more thoughts to form, causing more rushing, causing more confusion, causing more equations usually ending in one of the following;

A) This shall all be happening internally and because I won’t feel comfortable enough to ask for help, I won’t feel I deserve to ask for help, I will feel I am a burden, I feel I could be judged or trying to explain is likely to cause more anxiety; I shall politely decline and add that I am not hungry at the moment.

B) This shall all be happening internally but it will show outwardly in the form of anxiety, such as shaking, jiggling, pacing or increased respiratory rate. I won’t want to be a burden, let anyone down, cause disappointment or questions, so I’ll try to join in a little, try to blend in, try to appear ‘normal’ but the internal torture will be continuing, growing and expanding, louder and louder until I can no longer hear you talking to me. I see your mouth moving and I try to keep up but I hear nothing over the sound of my own thoughts…

C) This shall all be happening internally and I’ll have lost all hope of keeping thing under wraps because due to the fact that I’m screaming, crying hysterically, hurling nasty comments at anyone that comes near and ready to pull my own skin off; it’s pretty external too! This, of course is embarrassing to say the least and it doesn’t encourage you to be in a situation that could involve food, or fluid, or snacks, or humans, or…

I am going to separate ‘Becky’ and ‘Anorexia’ for a moment, I’m sure it’ll sound a little weird, but it’s the only way that I can explain it. Becky would love to be recovered, obviously anorexia is against that. Becky would like to eat that dinner, anorexia doesn’t agree. Becky would like to be physically healthy, anorexia would prefer illness and incapacity. Becky would like to do awesome things with her sister, anorexia wants to isolate. Becky would like to break free from anorexia and so anorexia does all it can to keep a tight grip; a large part of that is portraying the person as something different to what they really are, who they really are. So you see, the words I speak are not always the words that I wish I could speak, the way I am is not always the way I truly feel, if I seem distant or aloof it is, more often than not, that the noise in my head is so painfully loud and disorientating that I cannot follow a conversation. Do I choose any of these? No. Can I snap my fingers and eradicate these? No. Do I wish I could? Yes!

Recovery does include choice, decisions and taking responsibility for your wellbeing, but that has to come with time; by setting someone up with all the responsibility of making ‘good’ choices, doing food prep, refeeding themselves, distractions from scary thoughts and self-managing other behaviours, the likelihood of a positive outcome isn’t great. The possibility of relapse, entrenchment, chronicity, physical damage, psychological risks and death are scarily much more likely. Treatment has changed over the years and there are some amazing research studies out there that have completely altered the way that the world views eating disorders and the treatment that gives the best outcome; unfortunately that up to date information and treatment has yet to become the ‘normal’ practice. Those that manage to get early intervention, those that are treated intensively from the word go, those whose parents are included in treatment and empowered all have much more favourable outcomes, over those that are treated by out dated, non-evidence based treatment. Some parents have taken to using a ‘Life Stops Until You Eat’ approach; I think some people would probably deem this to be over controlling and impractical… I’d say they are amazing people that have found up to date information and regardless of whether the services in their area are up to date or out of date, they are doing what they need to do in order to save their child. My parents were told by the Doctor that they were worrying, that I was fine, that it’s just a phase that most girls go through, not to make a big deal out of it as it’d pass and if they did involve themselves they’d make things worse. That Doctor was wrong, that Doctor failed my parents massively because he made them feel stuck; what they knew was right for their daughter wasn’t the same as what the Dr had said and I really hate the fact that he added in that little bit suggesting that the blame would be on them. WRONG. Everything that he said was wrong. I wish the information available now had been available then because possibly, really possibly, life could have been very different for all of us and anorexia wouldn’t have taken as much as it has.

So, you see, leaving someone alone until they are ‘ready’ is only ever going to cause harm because the more unwell someone becomes, the less likely they are to have the cognitive function needed to make those decisions. If it were as simple as being ready to make changes and deciding to do things differently then we wouldn’t see so many losing their lives, we wouldn’t see the level of chronicity, we wouldn’t have eating disorder units or people being tubed on medical wards; there’s no fun in any of this. If it were as simple as a choice I’d have made that choice a long, long time ago. Always remember; separate the eating disorder from the person, they are not the same and not everything is as it seems when it comes to what is said and what is meant… Locked inside a cage, screaming but screaming silently, I’d yell all sorts but really I was begging, begging for someone to step in and take over the fight, argue with anorexia and provide a wall that meant I had no option; if I had no option anorexia was still loud, but the thoughts aren’t the same because there are no loop holes, no escapes, no ways around it… Sometimes that’s what it takes, sometimes that’s what is needed… Sometimes that’s what I need.

‘They have to be ready to change..’  – No, no they really don’t but they do need someone, be that family, friends, a treatment team etc. who are willing to safely and consistently enforce the steps that need to be taken are taken, until the person is ABLE to make changes. Whilst the brain is malnourished cognitive function is massively impaired, the brain is poorly and that person may desperately want to make the changes, it is the illness that can make that impossible. They aren’t being awkward or difficult, it’s not a case of choosing to disengage or ignore advice; things can take time, recovery isn’t easy and sometimes we need someone to step in and take the reins for a bit.

Above all else, if we’ve been labelled as chronic, treatment resistant or noncompliant… Please don’t write us off as ‘never going to recover’, please don’t give up hope that we can get better because when we have no hope we so desperately need others to hold hope for us… Please don’t give up on us; I know it’s frustrating, I know it can be like groundhog day but please, please don’t ever give up on us because we are still in there somewhere locked inside, blocked and silenced by anorexia

‘They have to be ready to change..’