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What they don't tell you about eating disordersWelcome to all my new followers. Thank you for joining me. Whilst it’s lovely to have you hear, it means though, there are more and more searching the internet to find support, resources and answers when facing an eating disorder.

Thinking back on our experience and what we have travelled through plus what others have shared, there is a list of things that aren’t told to you when you start this journey. You find them out yourself the hard way and often alone. Some come as a surprise, others you realise are normal but you didn’t think about it. So I thought I would list them, just so it’s out there and because medical support teams don’t tell you.

  • You (the carer) are often the front-line and sometimes only line of care. Funding and resources can make it very difficult to get what you may need.
  • This is going to be a long journey. You won’t just get well after the first ’round’. It will take years in some cases.
  • You need to treat yourself for self-care just as much as you care for your loved one. It’s essential to survival.
  • Your marriage or significant relationship will be tested to the max. Take care of it.
  • This is NOT your fault. It’s not your parenting or your family. It is a genetic pre-disposition.
  • How exhausted and OVER it you will be. How refeeding is draining. That you will have a list of appointments on a weekly, fortnightly, monthly basis that you might have to drive miles to.
  • You will find yourself up against schools, doctors, clinics, friends, family. Most have a ‘warped’ idea of eating disorders. You have to explain and educate just to get the care your loved one needs.
  • You will need to swat up on symptoms, treatment, research. No one else will teach this. As you are the front line you need to know this stuff.
  • There are not enough resources or funds in place to provide what your loved one or you will need. That includes treatment centres and hospital beds. And a lot of written resources are often out of date (badly).
  • You are not alone – even if it feels like it. There are many of us on the internet, facebook and other medias who are travelling this journey and can support you.
  • Your child will become a totally different person – loud, rude, violent, abusive, manipulative and lies. This is the illness not your child.
  • Logical, clear, rational thinking will not be part of your loved ones thinking. The illness is in full residence and they are not able to eat, care, stop or save themselves when they are very ill.
  • When really sick, they smell. This really threw me. My beautiful daughter smelt like death – sour, old and decaying. The body is breaking down and the smell starts from a relatively higher weight than you think.
  • Watching the lanugo (fine hair) grow on your child body. Also quite freakish for a parent. It’s the body’s way of keeping warm when there is no fuel to feed it or enough fat to warm it.
  • Night-time heart rates go much lower than day time. Whilst doctors do the medical observations they only ever do day-time, standing and sitting ones. At very low weights the night-time heart rate is actually very scary and can be dropping into intensive care levels without you knowing it.
  • Medical professional won’t know it all. Medications are one big area they are in the dark about. It’s trial and error, of sometimes many medications tried or grouped to find something that might work.
  • That relapse is every parents nightmare, when in actual fact it can be monitored and cared for quite closely by an aware and caring team.
  • There will be a before ED and an after ED state for your family. It will affect everything and the way you live and think for years to come – even when your loved one is fully recovered.
  • Eating disorders are a family illness. It will affect all the members and relationships within.
  • How quickly your loved one can develop an eating disorder and become critical.
  • The blood results will stay ‘normal’ for ages then suddenly drop at the last possible minute. Make sure you have medical support around you.
  • Hope is real and full recovery possible. Even good levels of recovery are better than the original illness.
  • Associated and long term digestive problems, bowel problems, bladder problems, over health problems, teeth, bones, Vit D, Vit B, calcium levels.
  • Despite all the pain, fear and the enormity of it all, you will be given strength to do this.

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What I won't share

 

To all those who want information for school projects, media blogs, uni projects:

I will not share or comment on:

  • my daugher’s lowest weight
  • pictures of her at her worst
  • a detailed state of her fingers nails, hair or other physical attributes
  • how eating disorders affect your looks
  • my daughter’s detailed list of safe foods or fearful foods
  • BMI weight for either my daughter or make suggestions for your BMI
  • the words healthy, beauty, inner beauty, protein diets, fresh diets
  • dieting or food tips
  • what are better foods or healthier foods to eat

why:

  • it takes the focus of just how dangerous and devasting eating disorders (particularly anorexia) are
  • it diminishes eating disorders to the physical and superficial
  • it is not helpful or useful for recovery or media intake
  • sends the wrong message about foods, health, body weight etc.
  • eating disorders are not an illness about food or weight
  • there are far, far more devasting consequences and ill health from having an eating disorder than your nails, skin, hair etc
  • there are no good or bad foods

However, I will share:

  • the real body and mind breakdowns that occur (did you know the uterus thins out to almost paper and only thickens once the body is repaired and periods start – just learnt that)
  • how incidious, manipulative, dangerous and all consuming eating disorders are
  • that it is an illness of the mind that affects all genders, cultural and social areas
  • that physical health and healing comes when a varied and wide food range is eaten
  • the long lasting effects of eating disorders are those under the skin: the mind, behaviours, organs, bones, teeth, reproductive system, endocrine system …
  • what research has been done and how much more needs to be done
  • what resources (including financial) are not being funnelled into eating disorder areas
  • how eating disorders affect families and relationships
  • recovery and healing that encompasses all areas of an eating disorder.

I have met some wonderful people who are creating great stuff, from documentaries, short films, very informative and balanced websites. But others still have a lot to learn about eating disorders. These are the ones I want to grow and stretch in their ideas of what an eating disorder is really all about.

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The below is a powerful post of what not to say, even if you think you mean well. Even though the study was targetted at anxiety, the results are the same for depression and eating disorders. Throw-away phrases like those below, never help the sufferer, only make the journey back to health harder, lonelier and longer.
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The Priory Group asked anxiety sufferers to share the worst comments people had made about their anxiety. The results, shown in these pictures, revealed a general lack of empathy.

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Natalie Clince / The Priory Group

“Saying ‘snap out of it’ or ‘there’s nothing wrong with you’ is hugely detrimental,” says long-term anxiety sufferer Jonathan. “What that person doesn’t realise is that they are embedding those thoughts into the anxiety sufferer’s mind, which ultimately makes it worse.”

Dr Paul McLaren, a consultant psychiatrist at Hayes Grove Hospital, agrees that people need to have a better grasp of anxiety as an illness.

“It is not easy to switch off,” he said. “We need to work on educating people to help them understand that anxiety is a normal part of human experience and nothing to be ashamed of.”

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Natalie Clince / The Priory Group
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Natalie Clince / The Priory Group

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What if you gain weight from all of this? You’ve already gained weight since last summer. What if it all goes straight to your expanding hips and thighs? What’s wrong with you? Did you really need to eat the whole plate? You know, you look pregnant, right?eating and food guilt

While I can’t control these automatic thoughts, I can remind myself that they’re definitely mistaken. I can remind myself of the truth.

If you’ve recently had the same kinds of demoralizing, irritating thoughts, here are a few reminders:

  • You have permission to eat whatever you want. The only rule, if there is a rule, is simply that you savor and enjoy what you’re having.
  • Normal eating is flexible.
  • You have permission to reach for seconds, if you like, or to stop after one helping. It’s totally up to you, your cravings, your hunger and satiety signals.
  • You aren’t naughty, bad, stupid, disgusting, an idiot or ______ for eating certain foods or for having more of certain foods. These are the words of the 60 billion-dollar diet industry (and many women’s and “health” publications). Unfortunately, they’ve become engrained in our vernacular. Which is understandable, because, sadly, such statements, seem to be everywhere. But they’re false (and manipulative).
  • Whatever you’re feeling is OK. Sometimes, we have a tendency to berate ourselves for feeling guilt or shame or discomfort. Why can’t these feelings just go away? Shouldn’t I be over this by now? But those automatic thoughts and feelings — yep, the negative ones — are OK. These may be deeply held beliefs. So try not to judge yourself for having them. Acknowledge how you’re feeling, and try to feel those feelings. Again, whatever you’re feeling is valid.
  • The guilt we feel is really more of a habit than the truth. Those are the words of Susan Schulherr, who told me a few years ago:

“…Feeling guilty about high-calorie foods, or fats or sweets, is a habituated response…the habituated thought is going to come up whether we like it or not. So the trick is to recognize it for what it is: a habit, not a truth.”

“As I say to my clients, you may not be able to stop the thought  or related feelings from popping up spontaneously, but you don’t have to set out the tea service and invite them to stay. Once we recognize we’re in the guilty feelings, the step toward change is to interrupt them rather than to let them romp at will in our psyches.”

“If guilt pops up when you’re trying to enjoy [food] in peace, you need to take that step back and respond with your own version of ‘Oh, of course, there’s that guilt stuff again. It makes me feel like I’m being bad, but I’m actually not.’”

  •  I also really like these other phrases from Susan: “I don’t have to earn the right to enjoy what I eat.” “What I eat has nothing to do with being good or worthy.”
  • Try to meet yourself — and those negative thoughts and feelings — with compassion. Talk to yourself in a kind way. Try to act in kind ways.

When guilty feelings and negative thoughts arise, try to remind yourself that you haven’t done anything wrong. Remind yourself that you are still worthy.

You are worthy whether you reach for a second helping or not. You are worthy whether you eat an apple or a piece of apple pie.

You are worthy whether you have these feelings or not.

 

From Weightless Blog

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“Learn to separate yourself from the eating disorder”

Heard that yet from your therapist? If you are in very early recovery you are not going to understand what they mean. You and the eating disorder are still very much one unit. Are psychiatrist used this image to help Sophie understand.

  • Cover one hand with the other: that’s you and the eating disorder at the beginning. The ED is totally controlling you.
  • Then slowly, gradually start to move the hands apart: As you recover and learn more, you can start to see two separate entities, yourself and the ED.
  • Finally, your two hands are far apart: you are no longer controlled by the ED, you are your own person.

Both carers and sufferers must learn this separation technique. It is critical for recovery. It removes the blame and the idea the person is the problem. It shows that the eating disorder is a separate voice and thinking pattern to you. The eating disorder is the problem, never ever the person.

One of the best ways of becoming aware of the ED and how it is separate to you, is to learn to externalise the eating disorder. Like it is a separate being. It also empowers you to be able to make positive changes and think encouraging thoughts. It disempowers the eating disorder and the control is has on your life.

1. Give it a name

This may sound weird, but it does work. Give the ED a name. Ana, Mia, Ed, anything. This makes the illness separate to you. You address the illness. You see it as a separate entity to yourself. This gives some distance and makes the illness objective rather than personal.

2. You are not a label (or a victim)

Don’t call yourself or others the ‘anorexic’ or  the ‘bulimic’. Doing this ignores the sufferer as a person. They become a label or statistic. You are a person with a mental health illness called anorexia. All the things that made you unique as a person before this illness are still there and still real. The idea that you are a victim, also removes your power as a person. The word makes you feel you are unable to take control of your own life.

3. You still have a voice

It’s just silenced. That’s what the ED does. Learning to exercise your voice and make it strong again, gives you back the control. Just because all you hear at the moment is the loud, negative and destructive ED voice, that that is all there is. Your voice is still there, underneath, and can be developed to be stronger than the ED voice.

4. Make third party statements

When you don’t eat your scheduled meals, or you choose ED behaviour ask questions that don’t point the finger at you.

  • How did the eating disorder make you skip lunch?
  • What did Ana tell you today about yourself?
  • That’s the eating disorder voice I hear, what does (your name) think or feel?
  • Who made that statement, you or Ana?

5. Notice your vulnerable triggers and times

Eating disorders use certain ‘weak’ points, situations, times of the day, certain people to trip you up. ED behaviour and slip-ups are always stronger at these times. Being aware and forewarned can help you beat the ED at it’s own game.

6. Don’t beat yourself up

When you find it too exhausting or too hard to separate from the ED and you just let the ED do it’s thing, be gentle on yourself. It takes a lot of time and learning to get the separation/externalisation happening. You have lived for so long with the ED being often the only voice in your head. Your own voice is rusty from dis-use and like any unused item, takes a while to work.

7. Believe

Yes, externalising the ED is possible. It is a real thing and can happen for anyone and everyone. But it’s not a magic pill or wand. It needs commitment and skills but achieving this is a major step forward in recovery. It opens your eyes to the real character of the eating disorder and it shows you the beauty of your own voice. Therapy with a skilled professional really helps with learning this process.

 

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It’s about learning what are healthy boundaries. How to protect ourselves, our identity, our health, our mental state.

Boundaries work two ways – us protecting ourselves from others who don’t respect our boundaries; and us learning to respect other’s boundaries.

Often those with mental health illnesses have never learnt to build boundaries that protect them from people, situations and emotions around them. We have allowed others to crash our boundaries, giving up our rights and identity to others.

But more than that, eating disorders being the nature they are, are another unwanted crasher of boundaries. We can learn to push back people who would treat us like this, but will still allow the eating disorder to destroy and deny us every human right and life itself.

Recovery encompasses learning to build healthy, loving boundaries that respect us as people and keep us safe. We learn to set limits on the people who hurt and deny us, but we also learn to set boundaries on the eating disorder. We learn to tell it “you cannot come here again”.

Like all boundary building this takes time. It is not easy learning to build boundaries. We feel like we may be selfish or manipulative but building boundaries are not like that. It is critical, healthy and right to do so. It takes time and practice to build the boundaries. To tell people they cannot talk or treat you like this. And most importantly for those with an ED, that it is no longer welcome. You will not give it the time of day, it cannot continue to treat you this way or destroy you life.

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I wanted to share this lovely post from one of my readers. As a mum with two children struggling with an eating disorder she gives some great advice, hope and strength to those of use following a similar path. The reality of living with an eating disorder in the house is different for everyone. It is tough, frightening, painful and like living in some private, hellish parallel universe. What is also frightening is how strong a link there is from eating disorders developing and fathers who are absent, abusive and neglectful.

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Hello everyone,

A swift update. My son Jordan [who likes to be called just J] ended up being sectioned and spending nearly two and a half months in the Huntercombe hospital, Stafford, UK. It was a nightmare trying to get him in the ambulance to take him on the 3 hour journey – his resistance and strength was superhuman – quite surprising for someone so weak with starvation. The dents in my freezer where he punched it is testament. I’d even struggled to disarm him when he’d grabbed a couple of bread knives and tried to stab the social workers. Once inside the hospital, he protested violently, kicked the furniture and finally fell to his knees, sobbing and breaking down totally. It was heartbreaking, but necessary. I was relived that he was finally where he needed to be. He was admitted weighing 8 1/2 stone after losing around 1/3 of his body weight. After admission his blood pressure dropped dangerously low. Thankfully the hospital staff saved his life and put him on the road to recovery. He hated it there, but was determined to do whatever it took to get himself out and he quickly and steadily gained weight. He was discharged weighing 10 stone, which is still very low for his height, but he is terrified of getting any heavier.

He is still firmly in the grip of anorexia and doesn’t really want to recover [although he tries to convince us that he has recovered.] Just like Sophie, for the first month he seemed to be doing well; he was perky and chatty, controlling his own food intake and maintaining his discharge weight. However he is now slowly losing weight again, even though he eats somewhere between 1700 and 2000 cals per day. He goes through periods of food obsession. At first he would only eat a variety of just a handful of ‘healthy’ foods; that changed and his calorie intake came largely from ‘healthy’ fluids, including lots of milk; now he’s gone to the extreme of eating mainly unhealthy food and drink, such as energy drinks, kitkats, fish and chips from the chippy and black coffee. He sees the CAMHS team regularly, but under duress. He refuses to co-operate and will only agree to being weighed and having a very brief consultation. He began haphazardly taking his anti depressants, just before stopping them completely, insisting he doesn’t need them. He refuses to see the medics and have tests re his curved spine and sleep paralysis, saying that he can’t stand being touched during examinations. Despite all of this, the old happy ‘normal’ J that we used to know – the one that used to joke around and the one who you could have an intelligent conversation with – does still exist and emerges fairly frequently. He is very changeable though, one minute he’s laughing and feeling optimistic about the future and making plans/setting goals and the next he’s angry and depressed and saying he didn’t ask to be born. He is frequently argumentative, aggressive, verbally abusive, selfish … it’s as if he’s possessed by the devil. I’ve learnt to keep my composure and walk away from him when he’s being nasty, telling him I refuse to talk to that other voice/creature. After a short time he will calm down and be nice and reasonable again and all the harsh words will have been forgotten. He never apologises though and has a complete lack of empathy for anyone else. The good thing is, he is truthful and admits his dieting had got out of hand, that it was all about control, that he does hear the ‘anorexic voice’ [saying, for example, that he used to grab a handful of cereal, put it in his mouth, but was then compelled to spit it out], that we had all been right, but that he had refused to listen, believing that we were all lying to him… He says he forces himself to ignore the Ana voice as he has no intention of ever getting sectioned again. He jokes that he’ll be visiting his younger sister Melissa in hospital when she gets sectioned. He tells me to stop worrying and that although he hates food, he knows he has to eat. He is aware that there is a strong chance of relapse and says he’s not going to let that happen. How can any parent not worry? Due to being malnourished for so long he now has low bone density and a curved spine and he has weakened his heart. He also has very poor short-term memory and constantly repeats himself. The hope is that he will settle at college next year, build up his confidence and find some happiness [he did try a college course this September but it was all too soon – all the anxieties and doubts flooded back and overwhelmed him and he had to drop out]. Thankfully he has a lovely supportive friend.

Melissa [now 15] is sliding down the same slope as J. After battling with her E.D and, for months being able to maintain her weight of around 8 1/2 stone [which is very low for her height of 5ft 8″], she is now losing weight again and struggles to tip the scales at 8 stone, fully clothed. She used to be a healthy 10 stone and a perfect size 10, but thought she was fat. She is very rigid in the handful of different foods that she allows herself and in her calorie intake, which is now only a few hundred per day. She still thinks she’s fat even though she is very thin. Thankfully she has a lovely CAMHS counsellor, who sees her weekly and her teachers/mentors at Bryn Elian school in North Wales are bending over backwards to support her – she is allowed to leave early and go in late on some days, has been able to drop unnecessary subjects and is allowed to learn maths at home. So the reduced school stress has resulted in an improvement in her confidence and mood. She is motivated to complete year 11 and pass her GCSEs and go to college next year. Hopefully she can stay healthy enough. Frequently though she gets so depressed, tearful, argumentative, nasty and even violent. Her eyes glare and something ugly speaks. It really isn’t her as the real Melly is gentle, loving, caring, helpful, beautiful and a joy to have around. Ana-Melissa sometimes threatens to self-harm. We have spent endless hours just talking and cuddling and crying together. [She’s so different to J who doesn’t do hugs]. Despite the fact she has many lovely supportive friends and lots of male admirers, she struggles to be happy. She feels constantly cold and her hair is falling out.

Their older brother and sister Andy and Shelly seem to have given up and feel that Mel is just an attention seeking difficult teen. It is difficult trying to convince them that neither J or M want to be this way, that they cannot help it, nor can they fight it alone. At least Mel had the strength to ask her school teachers and everyone else for help. I try to stay calm and understanding and supportive and positive thinking, however I’m not supermum and I sometimes can’t help raging and effing and blinding back at them. And yes, I’ve told them both to just grow up. I do get over my angry outbursts and frustration quickly though and both J & M know that I’m just releasing tension and that I’ll always be there for them, will always love them and will do whatever it takes to help them both back to health and happiness. My GP and the CAMHS team have told me to expect to be the punching bag and that this will be an up/down struggle for years, maybe a lifetime. There was only one time when I totally lost control, and that was when after the millionth time of going round and round in circles with Melissa I finally blew my top and yelled that I couldn’t take it any more. She had been my rock during our worst times with J and now she was sapping all my energy. Rather than hurt her or smash up the house as I so deeply desired at that moment, I stomped my way upstairs to my room, sat on my bed, gripped the quilt and, from the pit of my stomach, just screamed and sobbed and rocked backwards and forwards, yelling “why, why why”. This went on for a good 10 minutes until I had burst blood vessels in my face and I had nothing left inside of me. Shelly came up with a cup of sweet tea, spoke soothing words to me, told me everything’s going to be ok and helped me pull myself together. Meanwhile Melly ran outside and we found her sitting and just staring into space. Anorexia is an ugly powerful destructive demon. Daily I pray that J & M find the strength to overcome it.

If I could offer any parent advice I would say get your GP [pressure him/her if need be] to refer your child into the psychiatric services as soon as you know he/she is showing signs of a worrying eating pattern, and once there, if things don’t improve, push for admittance into an inpatient eating disorder unit/hospital. Remember, our kids will not/cannot just ‘snap out of it’. I was so angry with the old GP [we’re with a much more sympathetic and helpful one now] because he just dismissed us, saying nothing could be done unless J wanted help. He had a mocking, couldn’t-care-less attitude and told me I had no choice but to just wait until J got so ill that he’d be rushed into hospital, but by then it might be too late. I just sat there, stared at him with a look of shock horror and told him he has to get us some help. I didn’t move from my seat and just kept repeating that he has to help us. Eventually he said he would have a word with his colleagues at the local hospital and see what could be done. A few days later he phoned me to say that he had put a referral through to the Child and Adolescent services, but warned me that the waiting list was long and that we could be waiting weeks. Thankfully it only took 2 weeks.

My love and prayers go out to all who struggle with an eating disorder and all the families involved. It really is tough on everyone with all the stress and worry and constant walking on egg shells, not to mention the endless meetings with all sorts of professionals – psychiatric nurses, psychiatrists, doctors, family therapists, dieticians, school teachers/mentors/educational welfare officers… all this on top of having to earn a living.

Sorry I’ve gone on a bit! It helps to get the thoughts down. Mel also finds it therapeutic to diarise stuff that has happened in her life in relation to her father and what led to her eating disorder. She says that when she is older she will publish it on my website http://www.sharonkilby.co.uk/site/ The site exposes corruption in North Wales and the people responsible for forcing my children to live with their abusive father almost half their lives.

I have been shocked to learn that eating disorders are not so uncommon anymore. It seems that everyone knows someone who is suffering with one. Melissa knows 4 people in her school year who are sufferers. My boss knows 2 people who are anorexic, a friend of mine knows 2 anorexics [one of them fully recovered and went on to be happily married with child, the other person didn’t recover], my solicitor has an anorexic in her family… My God what is happening to our youngsters? Maybe EDs are symptomatic of the sick insane, evil society that we are forced to live in [more on that in my site.]

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