Anorexia - The Truth, Our Truth - EDAW 2017Tuesday, February 28, 2017
Trigger Warning - Before you read this post, I would like to make it clear that the post contains wording, information and graphic details of Anorexia Nervosa and may be triggering to some people.
Today I have a different post for you, yesterday saw the start of EDAW 2017 or Eating Disorders Awareness Week 2017. Raising awareness of eating disorders, or trying to, is something very important to me and today I am going to share my story with you and hopefully raise some awareness of what it really means to suffer from an eating disorder, in particular Anorexia Nervosa and to help you to understand how it really is and not just how it is portrayed in the media and on TV programmes.
This is the most difficult post I have ever had to write and it took me almost a week to write, I have sobbed writing this post and it has broken my heart reading it back but if it helps just one person reading it, it will be worth my tears and heartbreak.
This post is going to be very long, usually I would apologise for that but I'm not going to today, this is important and the message I am trying to get across is very important so I ask that you please bear with me, take your time and please please read this carefully.
I will start with my story but the post will also include, facts, information, myths surrounding eating disorders, things we did not know and you might not and so much more information that I hope will help to raise awareness. I will also include helpline numbers and websites etc.
This post is written purely from my perspective, it is my story. I am not a doctor or a medical expert.
I would just like to say before sharing my story, anyone reading this who has someone they know, their child, a family member, friend, colleague etc who either has just been diagnosed or they think may have a problem, please do not read my story and worry, this is our story, it doesn't mean it will be yours.
On Saturday July 27th 1991 I gave birth to my beautiful baby girl, Nichole, Nichole was a very healthy baby.
Cole was a very good baby and after having a few weeks of colic, she slept through the night from 7 weeks 8pm to 8am and had a 4 hour nap every day until the day before she started primary school, I couldn't have ordered a better baby, she was fab! She was also lovely and other than a genetic kidney condition she was healthy, she met all her milestones and was a joy.
Cole has always been a quirky little thing, very random, very funny, very set in her ways and a creature of habit, I found out when she was a teenager she has Aspergers Syndrome, that suddenly explained my random, quirky and extremely unintentionally hilarious daughter.
Being a mum, I have worried about so many things "what if Cole gets in with the wrong crowd" "what if she tries drugs" "what if she finds herself in an abusive relationship" "what if she can't ever get a job due to her aspergers" "What if she gets bullied" and so on and so on, but the one thing I NEVER EVER worried about was "what if she gets an eating disorder"
When Cole was 5, I was pregnant with my youngest daughter and sorting out her room, getting ready for the new baby coming etc and I remembered being laid on my very big pregnant belly grasping under her bed for things when I found a bag, in that bag were a few days worth of Coles school packed lunches, she was 5 years old. I spoke to Cole, she said she didn't know why she had not eaten her sandwiches and why she had hidden them, the morning after I arranged a meeting with her teacher, the dinner ladies and the head of the school who all agreed to keep an eye on Cole, she hadn't shown any kind of different behaviour at home or school but I was very disturbed and worried, I made an appointment at our GP and went alone and with Cole, they couldn't find anything and put it down to me being pregnant and the anxiety of Cole having a new sibling. After that, nothing else happened, no more hiding food and Cole carried on as a regular, happy child and then 8 years later something else happened.
The Day I Will Never Forget
It was August, Cole had just turned 13 and we were on our summer holiday. It was very hot and we were all getting ready to go out of our accommodation for the day, and Cole wouldn't put her shorts on, she said her legs were fat, now one thing Cole has never ever been is fat, I am not going into sizes/weights etc as I am mindful of triggering, but she hasn't ever been overweight and at 13 was very slim and certainly not fat. I told her she didn't have fat legs and Simon said something about seeing more meat on a butchers pencil but she was adamant she wasn't wearing the shorts. I put this down to something all teenagers went through, most teenage girls have body worries, we didn't make a big deal out of it and off we went.
The Journey Begins
The not wearing shorts and comments about how fat she was continued for a few weeks after getting home from our holidays, Cole would compare herself to other girls in her year and ask me if she was bigger or smaller, she was always smaller. Then I noticed things were lasting longer, the crisps, biscuits etc etc and then came the packet reading, and that's when the very large, very heavy and excruciatingly painful penny finally dropped. "I think there's a problem with Nichole" I told my mum, she said "all teenagers think they're fat love, don't worry, it's a phase" but deep down in the pit of my stomach I knew it wasn't, Simon was of the same opinion as me and was also very worried, he never once thought I was being silly or paranoid.
I spoke to Cole about it, tried to be what I thought was as nonchalant as possible and suggested we might go to see the GP, "no way" was the response I got, Cole was adamant she didn't need to see a doctor, she said there was nothing wrong with her and I was being silly. But I knew I wasn't, along side all the packet reading, the food lasting longer etc came the weight loss, my beautiful, funny, quirky girl was disappearing rapidly, and not just in the weight loss sense.
I then did what I suppose most people would do and I googled "Anorexia" I had no idea what it was, I always thought that Anorexia meant that when someone who wasn't fat looked into a mirror, they saw themselves as fat, and they made themselves sick after meals, that was my knowledge of it. I had no idea it is in fact a mental health condition. When I googled Anorexia I didn't find much help at all, the dictionary definition of Anorexia today is "Lack or loss of appetite for food (as a medical condition)" and "An emotional disorder characterised by an obsessive desire to lose weight by refusing to eat" (definitions taken from the Oxford English Dictionary online 26/02/2017)
This didn't help me at all, so I decided to get a few of Coles magazines since they always had helpline numbers in them, every week we bought Cole Mizz magazine and Shout magazine and she also read my Heat, Look and Closer magazines and not one of them had a helpline for Anorexia or eating disorders, I then rang my GP surgery and asked if they had any helplines they could pass on and they didn't have any, I asked if they had a leaflet, no they didn't. I had never felt so desperate and helpless at this point, nobody could help me and all the time, things were getting worse.
I carried on searching, researching, I went to the library, I tirelessly looked online everyday and then one day I found a helpline via google, it was the B-eat helpline (was then eating disorders association but changed to B-eat 2007). B-eat is the UK's leading eating disorders charity, I rang their helpline number and spoke to a lovely lady who listened to me, all the time I was longing for her to say the same as my mum and my friends and everyone else who had all said the same thing to myself and Simon "it's her age, all young girls do it" but she didn't say that, instead she said "yes it does appear she has a problem" and my heart sank, I knew, I knew and still my heart sank and I thought that that was the worst thing in the world but it wasn't, and little did we know, there were so much worse things to come. The lady was lovely, she said she would send me some information through the post for parents and she told me about a forum for parents/carers on the B-eat website and suggested I join so I could speak to other parents and carers, she suggested I urge Cole to go to the GP too. I immediately joined the parents/carers forum on the B-eat website and I sent my first ever post it was entitled "can anyone help, I think my daughter may be Anorexic" even now typing that sentence I have a very wet keyboard from my tears, those words I never thought I would type, not about my Cole, my lovely, beautiful, funny, quirky Cole, why was this happening to us? I explained in my message what had been happening, by now we were in February/March the following year, I didn't ever expect to get any replies but it was worth a shot.
I checked back to the B-eat site later on in the evening and found I had over 80 replies from mums, sisters, foster carers and lots of other people who all cared for someone who either had been diagnosed with an eating disorder or they suspected had one. That forum became my lifeline, everyday I could chat with people who were in the same or a very similar situation, people who understood and I made some of the best friends ever, both carers/mums and sufferers who I am still very close to now.
I learnt more and more as I researched and spoke to mums and sufferers on the forums, I learnt that anorexia is a psychiatric illness, it can often be used as a form of control so the not eating is something the sufferer can control when they feel they can't control other things and that the weight loss is purely a side effect of the illness and not the reason behind it. I learnt that there were many other eating disorders that people suffered from and not just anorexia and bulimia, the ones I had heard of.
Time moved on quickly, as it does, and Cole continued to check packets, she was losing weight hand over fist and was shockingly thin, she was also doing lots of things to lose weight but still refused to go to the GP, I begged and pleaded with her but she wouldn't go, how do you force a teenager to get in a car? Believe me, I've tried. She wasn't eating much at all or drinking much and despite many conversations of me crying and begging her to eat she just said "I can't" I tried the "do it for me" and the "you're going to die" but still she wouldn't listen. All the time I continued to arm myself with as much research as possible, Simon would read the information after work too.
I had informed school of my worries months before and they said they would keep an eye out for her and I had also spoken to the mum of Coles best friend, she was in a friendship group, well if you can call it that because 2 of the girls used to do not very nice things to Cole, like empty her bag out on the desk at lunchtime just before the bell so she would be late, bullying I would call it. But one of her friends Faye was lovely and Cole spent a lot of time at Fayes house as Faye did at ours so I spoke with her mum who said she had noticed Coles weight loss, she said that if Cole were to go to their house she would keep an eye on her.
The weight loss continued and Coles mood changed, I can't put my finger on exactly when but she changed, she became snappy, and nasty and could say the most horrible things to both myself and Simon, but for some reason Simon always got it worse than me, and sometimes it felt almost like the girl standing in front of me, wasn't my Cole, my Cole wouldn't have ever spoken to me or Simon like that, she was absolutely vile on occasion. She wasn't too bad with Alicia but with us she was awful and especially with Simon. She would look at me like she hated me, this was usually around meal cooking times, or me asking her to go the GP or pleading with her to just have "one more mouthful" of her meal as she sat for hours pushing her food round her plate. This continued and all the time became harder and harder to deal with and Cole became more emaciated and was changing into someone I barely recognised.
Cole turned 14 in the July of 2005 and in the September she had a routine appointment at the hospital regarding her kidney condition, the consultant noticed immediately that Cole had lost a lot of weight and expressed his concerns, he did the usual thing of saying how thin Victoria Beckham was and how Cole didn't want to look like her etc etc, VB was at the height of her weight loss and almost everyone mentioned her to Cole. But the consultant also told Cole he wanted her to go to the GP, he said he was worried and he could see I was very worried and he practically ordered her to go, and to my absolute astonishment, she agreed.
The Arrival Of Henry
When we came home from the hospital I made an appointment for Cole with the GP, we had just come home and there was myself, Simon and Cole in the lounge, Lissy was at school. Again I tried to speak to Cole about my concerns, I never shouted and always told her how much we loved her and just wanted the best for her, Cole rarely cried, I don't know if that is due to her AS but she hasn't ever been emotional, but during our conversation she started to cry, she told me how she loved me and could see I was upset and worried but she couldn't help it and then she told me about Henry.
One of the things that is never mentioned in the media or in TV programmes such as soap operas when a character suffers with an eating disorder is the voice. This is sometimes called an eating disorder voice but it is quite shockingly the sufferers inner demon/bully, it is evil and nasty and the persons biggest enemy and something you wouldn't want to spend a minute of your day with, yet a sufferer has it 24/7.
Cole explained to me how she had a voice in her head, she named it Henry and not only was Henry a voice in Coles head, Cole could also see Henry, Henry would sit on Coles drawers swinging his legs taunting her and saying the most vile things to her. I asked Cole if she could describe Henry to me and I was absolutely horrified at what she told me, Henry is very very tall, around 7 feet tall, he is very thin, and he is black, not in the sense of race but the colour black, he has long fingers and big hands, he has spiky hair, red eyes and yellow teeth that look like a monsters teeth. That monster was living in my daughters head.
Henry liked to make Cole think he was her best friend, her only real friend, he is the only one who understands. Henry was very much in control, he'd sing to Cole, shout at her, talk to her, he'd tell her she was worthless, useless, fat, ugly, nobody loved her, he would say "your mum and Simon are trying to make you fat" he would sing "nobody likes you, nobody loves you" in a nasty sing song voice at her. He was always there, at meal times he was worse, after meal times too.
I was absolutely devastated to hear my lovely daughter explain to me that she had this vile monster in her head and how he would say "just one more pound" as she weighed herself countless times a day, but it was never just one more pound, it was never going to be enough for Henry, Henry won't stop until he wins.
Diagnosis & Help
Coles GP appointment came and she was diagnosed with Anorexia Nervosa and referred to our local CAMHS (child and adolescent mental health services) department. I was so happy, I thought this was it, she was going to go to CAMHS and she would be ok in a couple of weeks, after all that's what always happens on Hollyoaks, Emmerdale and other TV programmes isn't it?
Whilst we waited for our appointment Henry became much much worse, he was furious that there was now something to fight against him in the form of a therapist and me and Simon. I researched and researched as always but now I included the voice in my research, there wasn't too much information on it but it became very obvious that when Cole was nasty at mealtimes etc it wasn't Cole it was Henry, we quickly began to differentiate between Cole and Henry, and we realised that Cole was worse towards Simon because he did all the cooking, he provided Cole with her meals, in effect he fed her.
Coles CAMHS appointment came, she saw a therapist, they didn't have any specialist eating disorder therapists at our CAMHS dept so she saw a general child and adolescent therapist, she had to draw Henry in one appointment and I was horrified, knowing what he looked like and building a picture in my head was bad enough, but to see him on paper made me feel sick.
CAMHS were quite frankly a complete waste of time and didn't help Cole at all and when she was 16 and then an adult in the eyes of the NHS, she was referred on to a psychiatric hospital 20 miles away that had an adolescent department with an out patient department.
The department Cole was referred to was just as bad as CAMHS but for children up to 18 years of age, again, none of the therapists were specialised in eating disorders and after a few months of us travelling twice a week to appointments that were inappropriate and a complete waste of time (they just focussed on weight gain as CAMHS had done and nothing else) they decided to pass the buck too and Cole was discharged.
I felt so helpless and was panic stricken by now, why was nobody helping? Cole was spiralling and by this time was gravely underweight, something I didn't know but found out very quickly was that there isn't help for eating disorders widely available on the NHS, it is a complete postcode lottery and where we live, the North West of England, there isn't any NHS specialist help for eating disorders, there was 1 out patient clinic around 25 miles away (this has since closed) but in order to be seen there the sufferers had to have a BMI lower than 12, which is ludicrous because by this stage the eating disorder is out of control but because of how ill and underweight Cole was, she was referred there and got an appointment through in less than a week, again I thought we were finally going to get somewhere.
Cole saw a therapist once a week and a dietician but again unfortunately the aim of the therapy was weight gain, they said they had to get some weight on Cole before they could help her but Cole by this time was incredibly ill and wouldn't/couldn't engage, Henry was rife, he didn't shut up, he was in control of everything. The therapist was useless, again, wasn't specialised, why were none of these people specialised in eating disorders? How can they help without specialist knowledge? You wouldn't go to see someone for a hip replacement who wasn't an orthopaedic consultant, but my daughter had been passed from pillar to post to people who had no idea what they were doing.
I decided I would ring B-eat again and ask for help, they had helped me previously and I still used the forum on a regular basis and contacted their helplines when necessary. B-eat had advised me when I was furious we weren't getting anywhere after CAMHS and the other place and so I turned to them again. Cole was now considered an adult in the eyes of the NHS and as I said there was no NHS help for eating disorders where we live. I was advised to go to my GP and ask for a referral to a private EDU (eating disorders unit) and then we would hopefully get an assessment to an EDU and then we could apply for funding from the PCT to fund Coles treatment. My first instinct was to re mortgage our house and get the money and pay for private treatment but I was advised not to because it is seen as "going in through the back door" and if we did ever need NHS funding we were unlikely to get it.
The first GP we saw wouldn't refer Cole, we were told it costs the practice money, my daughter was dying but it costs the practice money! I found out a couple of days later that we had a new GP so I made an appointment and took Cole, my mum came to as back up and I asked for a referral to the EDU which was around 40 miles away and over an hours drive, the GP looked at me and said yes she would refer her for the assessment, I could have kissed her. That wasn't the hard part though, we got the assessment and then had to apply for funding for the treatment which would cost thousands of pounds. We were denied treatment several times and then in one last ditch attempt, I appealed to the lady on the phone and asked her what she would do in my shoes, she said she had a daughter and I said I hoped that her daughters life wasn't ever in the hands of someone at the end of a phone, I explained how ill Cole was and we received a letter with an appointment at the EDU a few days later, we had finally got our funding!
What Was The Reason Cole Became Anorexic?
Coles appointment for the EDU came and the consultant she was to see was finally specialised in eating disorders, he was lovely and in our first meeting he told me how Coles illness was not my fault, as a parent I blamed myself. I will call the doctor Cole saw Dr T. Dr T was lovely, he was understanding and very good with Cole, he explained to her that she was very poorly and needed urgent care but first he wanted to find out what was what. We had a 2 hour appointment explaining the history from Cole being 13, she was now 16 nearly 17. Dr T explained to us that everyone always looks for a reason for an eating disorder, a reason why that person developed an eating disorder, he said that there isn't always a specific reason and that some people were pre disposed to a mental health condition due to genetics, we had a history of mental health problems in our family. Dr T explained it to us by saying that people are born with a light switch in their head, some people have mental health genetics and some don't and that those who do are pre disposed to eating disorders and that their light switch would sometimes be flicked on from conception or birth and that that person would develop an eating disorder, and that was exactly what had happened with Cole.
There was no rhyme or reason to it, I found that difficult to process, I wanted answers, I wanted him to say "this is why" but he didn't, there wasn't reason. Cole continued to see Dr T, she turned 17 and in the September after her 17th birthday she started the upper 6th form or year 13. Cole wasn't responding well to treatment at all and was still losing weight, Dr T didn't always weigh Cole every time, she saw him 2-3 times a week, it was a 4 hour round trip for us and my parents were incredible and took us to every appointment.
At the end of September Cole was at her lowest ever weight, I'm not talking weights in the post but to give an idea, her BMI was now in single figures, she was dying in front of me. On Friday October 3rd 2008 I got a phone call from Dr T telling me that Cole needed urgent in patient care, he said she needed sectioning because there was no way she would do this voluntarily, but and there was a but, he worried because of her aspergers syndrome, she would pick up learned behaviours, this had previously briefly happened with Cole. He said so in light of that she would have to do "in patient at home" Cole was to stay at home, no school, no nothing. She had been made to stop dancing a couple of years before and hadn't been able to walk to school and back for over a year but now it meant no school at all, no going out apart from a 20 minute trip to the supermarket to choose her food once a week. Cole wasn't happy, she cried and screamed and shouted and Henry went into melt down, lying down all day wasn't what Henry wanted, the only time Cole could be alone was in bed, she shared a room with Lissy so she wasn't alone, and on the loo, Cole has never made herself sick so this was ok. I explained that she would be sectioned if she didn't comply and she reluctantly agreed.
The next 12 months were hard, we had increased appointments all including a 4 hour round trip plus the time in the appointment, so 5 hours at a time, I didn't care, I just wanted my baby back. School didn't send work home, apparently after the age of 16 they don't. I armed myself with revision guides and text books and taught myself, English Language, Sociology and Psychology at A Level and then I taught Cole, I taught her the best way I could and she sat her A Levels round our kitchen table with an invigilator that school provided and in the August of 2009 our lovely girl gained 3 A Levels all grade C.
Cole carried on seeing Dr T and time moved on, she was a little stronger and she did eventually reach what was deemed a "healthy weight" and eventually due to this we couldn't access any more funding and that was the end of her treatment with Dr T, it was a sad day not only because he was an amazing doctor and had helped Cole so much but because myself and Cole had built up a friendship with him, Cole used to always bring him a gift from our holidays and they were quite attached which was nice. Henry had gone quiet and Cole didn't see him, I finally felt happier that we were on the right path, but I did think it was wrong that the funding was pulled once Cole had reached what was deemed a healthy weight, she was still very underweight, no she wasn't dying but she was far from ok.
I would love nothing more than to sit here and type that it was all hearts and flowers and Cole recovered and kicked Henry's arse, but unfortunately I can't. One of the things that people don't realise is, you don't have to be emaciated to be anorexic, although Cole was a healthy weight, she was far from healthy and over the last 8 years she has been in a constant up and down cycle, she would go through periods of being a healthy weight and a very low weight and it continued on and on like that.
It is with a very heavy heart that I have to tell you that at the moment we have a house guest, he isn't welcome, in fact I hate him, his name is Henry. Henry is back with a vengeance, I can tell when Cole is going down and I can tell by her mood and the things Cole eats that Henry is back, he's been back for a good while now, months. He is relentless and never shuts up, Cole sees him at home, on the train, when she's making over clients, he is everywhere, singing, talking, shouting at her, how she is useless, worthless, fat, ugly, nobody likes her etc etc and he hates me and Simon but not as much as we hate him, I have never hated anything in my life like I hate Henry. Cole has lost a lot of weight and is looking incredibly thin, she has started to lose hair and has grown the "fur" to keep her body warm. We are desperately hoping Cole will accept help but at the moment she refuses to see the GP and Henry is very much in control.
Cole has osteoporosis, a condition linked with anorexia and she has only ever had one period in her life, anorexia affects the oestrogen levels and this affects the menstrual cycle and the bones, Cole had a bone scan around 4 years ago and was diagnosed with osteoporosis. She may not be able to have children because of the effects on her menstrual cycle. Even if Cole were to fully recover, the effects of her anorexia will have a huge effect on her for the rest of her life.
I can tell when Cole is herself and Henry is apparent, when Cole was younger she was horrible to me and Simon but ok with Lissy but now she isn't, Lissy gets it and Coles boyfriend too, Henry hates anyone who might stand against him and will tell Cole anything to make her believe him. One thing I have always been grateful for, is Coles aspergers syndrome, because of that Cole can't lie, and this has been very important because most sufferers tell a lot of lies and are very secretive. I will not let Henry win and I have spoken to Cole and told her that if push comes to shove, I will have no choice but to speak to our GP about sectioning her to get her help, Cole assures me that this won't happen, I sincerely hope not.
One of the saddest things about our story is that Lissy cannot remember having a sister who doesn't have anorexia, she can only remember Cole being anorexic, Lissy was just 7 years old when Cole started to be ill and in August Cole will have been ill for half her life, it seems and is very unfair.
Some Facts & Information
Types Of Eating Disorders
Most people think there are 2 eating disorders, anorexia and bulimia but there are in fact 6 types of eating disorders, these are -
✿ Binge Eating Disorder (BED)
✿ Emotional Over Eating
✿ Eating Disorder Not Otherwise Specified (EDNOS)
✿ Disordered Eating / Eating Problems
Facts We Didn't Know, And You May Not
✿ Anorexia is a mental health condition
✿ Early intervention is important, try to urge the sufferer to seek GP help as soon as possible.
✿ I didn't know sufferers had a voice, some see their voice & some don't & for some it is their own voice.
✿ When reaching a very low weight, sufferers develop fur on the body, the fur grows because the sufferer is very thin and cold all the time.
✿ Anorexia can cause Osteoporosis and infertility problems
✿ Weight loss is a side effect of Anorexia, it is not the reason behind it
✿ Sufferers will go to great lengths to purge or lose weight, doing things you won't have even thought about, arm yourself with research as much as you can
✿ There is limited NHS help depending on where you live, currently there is no NHS help within 50-100 miles of where we live, It is a real postcode lottery.
✿ Some professors believe there is a direct link between eating disorders and aspergers syndrome especially in females.
✿ Recovery is possible.
Myths Surrounding Eating Disorders
You have to be thin to be anorexic - you do not, not everyone suffering with anorexia or any type of eating disorder looks very underweight or underweight at all.
Eating disorders are a choice, a lifestyle - no they are not, eating disorders are serious and potentially life threatening mental illnesses; they are not a lifestyle choice or a diet gone 'too far'. The mortality rate for people with eating disorders is the highest of all psychiatric illnesses, and over 12 times higher than that for people without eating disorders.
People with eating disorders do it for attention - People with eating disorders are not seeking attention. In fact, due to the nature of an eating disorder a person may go to great lengths to hide, disguise or deny their behaviour, or may not recognise that there is anything wrong.
Eating disorders only affect teenage girls - Eating disorders can affect anyone, boys and girls, men and women. People from any background, people all ages from young children to the elderly, I know someone who was 9 years old when they developed an eating disorder.
Eating disorders are caused by photo shopped magazine images - Magazine images can impact on a persons body image and the pressure to look a certain way, but they do not cause eating disorders.
All Anorexics make themselves sick - they do not, being sick is known as purging, there are many ways someone with anorexia and other eating disorders will purge.
What To Do If You Suspect Someone Has An ED & Spotting Signs
It can be difficult to notice when someone has an eating disorder, but just some of the things to look out for are, the person isolating themselves, not accepting social invitations, they may appear withdrawn, quiet, they may have lack of concentration. They don't eat when they usually would, they say they have already eaten, they may use the bathroom after food, they may become snappy with you, start taking an interest in what you're eating and your size or that of others. They may lose interest in things they were always interested in previously, they appear to have lost weight, they seem disinterested in you, they appear tired and lethargic, they have began to exercise more.
If you are concerned about someone and you think they may have an eating disorder, speak to them and calmly explain that you're worried about them and think it would be best for them to see a GP, offer to go with them if they don't want to go alone.
For parents, it is very hard to stay calm when you're worried but we did go about things the wrong way looking back, when we first started to notice Cole was losing weight and eating less. We would say "you'll die you know, you see it all the time on TV" we tried to almost frighten her into going to the GP but she didn't think she had a problem so wouldn't go, she thought we were being silly, we tried countless times, we have tried the "do it for us" route but nothing worked, try to stay calm, if they won't go, maybe make an appointment to speak to their GP, if they are under 16 you can do this.
Get help from B-eat, I will leave all their details below, they are fantastic and very knowledgeable, inform school or college if the person is of that age. If it's a school or college friend you're worried about, speak to their parents, even if you're wrong or upset someone, it is better to be wrong and someone be upset than to do nothing, you might just help that person recover.
Please do not worry if you're son or daughter says they are fat or has body issues, it doesn't mean they will develop an eating disorder, talk to them about their concerns and keep an eye on them and their behaviour, it could just be that they have some body concerns as many young people do but keep an eye on it, but please don't worry that it will develop into an eating disorder because it may not.
Being There For Someone With An ED
It is very hard when someone you love or care for has an eating disorder and it is very difficult to know what to say, simply letting that person know you are there is enough. Usually people who are suffering from an ED don't discuss it, it is a very secretive thing, they won't sit telling you how they purge, what they eat etc etc, if the person has been diagnosed or is going through the process, let them know you are always there anytime and you aren't going to judge them, tell them you are going to try and find out as much information as you can and do exactly that, once I started to research, I found it much easier to speak to Cole and to deal with Henry once I understood things more.
There really is no point shouting, arguing and shouting with the sufferer will make them anxious and you too, if they have a voice, that voice will relish you arguing and use it as a weapon, telling the sufferer, you don't care about them that's why you're shouting etc etc. It is hard when emotions run high and you're worried about someone you love but try to remain calm, tell the person you care about them and will do anything to help. If they have started recovery, ask them how best you can help them, would they like help with anything? Tell them you're unsure of what to do, how to act, be honest with them and ask they do the same but please try to remember it can be a very secretive time, and the sufferer isn't lying or deceiving you because they don't care about you, it is the nature of the illness.
If they do have a voice and they are nasty and don't appear to be your child or loved one anymore, it is the voice and your loved one is still in there somewhere, try not to react to the voice, if the sufferer says something hurtful, as hard as it is, try not to react and walk away, I used to say "I am not discussing this with Henry, I'll speak to Cole later" and I would walk away or I would just say "ok" and leave it, it would depend how infuriated I had become.
Join the support forums online with B-eat, suggest them to the sufferer too. I will include all the details, below, they were my lifeline and I gained so much knowledge too and it does help to speak to people in a similar situation, being the parent of someone with and ED is isolating and lonely, nobody truly understands if they haven't been there and the online forums and support I found to be a huge help and I have made life long friends. There are support groups for young people too, not just parents, there are support groups and chat rooms for young people too, and for sufferers, all the forums and chat rooms with B-eat are moderated and safe.
Give the sufferer helpline numbers and online support details, they might not read them and they might ignore you but they might just use that information and it might help.
Things Not To Say To Someone With An Eating Disorder
✿ I wish I had your problem
✿ You don't look anorexic
✿ If I didn't know you had an eating disorder, I wouldn't know by looking at you
✿ You look well (to someone with an ed this means "you look fat")
✿ You look better with some weight on you (again this will be taken as you look fat)
✿ You're so lucky you're that thin
✿ Just eat something
✿ Loads of girls think they're fat
✿ You need to eat some pies
Just A Few Of Unhelpful Things That Have Been Said To Me & Simon Over The Years
✿ Just force feed her
✿ If she were mine I'd make her eat
✿ Take her to the chippy
✿ Get a pie down her
✿ You'd think she'd get better, she knows you're poorly Zoe
✿ Why can't she just see she's thin
✿ Has she looked in a mirror
✿ I'd just make her sit there and eat it all
✿ I'd drag her to the doctors
✿ Just swap the skimmed milk for whole and put whole in the skimmed bottle, she won't know
Eating Disorders, The Media, TV, Schools & Sensationalism
I have campaigned for years to try and raise awareness, this post I am aware is like a phone book in length but I wanted to put as much information in as I could so that it is all in one place, so if needed, someone can come back to it and read over it or copy and paste the information they need.
The media have sensationalised eating disorders for as far back as I can remember, myself and Cole have been contacted by several magazines and television companies wanting us to tell our story, but with that they want weights, lowest weights, photographs of Cole emaciated and at a healthy weight and I always refuse, the only way I would ever speak on TV about our story is live TV where I couldn't be edited.
Not once in a TV interview or on a news report or in a soap opera have I ever seen anyone mention the voice, recently in Emmerdale a character named Belle had a mental health condition and was hearing voices, she did not have an eating disorder. When Belle heard her voice, another actress played the voice and it was well put across but when another character on Emmerdale Priya developed anorexia, never once was the voice mentioned, why didn't she have another actress or actor playing her voice? I haven't ever read a magazine article that wasn't triggering and one that mentions the voice or the hair loss or the fur the sufferer grows, never.
If the media did not sensationalise eating disorders and talk about weight and before and after pictures etc etc and they actually wrote articles with facts in and the truth, more people would know more about anorexia and other eating disorders and how it really is to be a sufferer or a carer, a friend, a partner but they don't want to tell the truth, shocking story lines sell magazines.
My girls and myself and Simon were never taught about mental health or eating disorders at school, I have tried so many times to go into schools to speak about it but they never return my calls, emails etc, so many children and young people could be helped and would be armed with the correct information instead of shock tactics that the media portray.
Before writing this post, I decided I would do some research of my own, I asked on social media and I asked my friends and family what they thought it meant to suffer from anorexia, I was specific with anorexia because that is what Cole suffers from. Cole also asked some people she knows what they thought it was.
These are some of the quotes from people myself and Cole asked - "a skinny person who thinks they are fat" "someone who makes themselves sick after food" "someone skinny who makes themselves sick" "its some sort of illness I think, but I don't know what" " they look in a mirror and see someone really big when they're skinny" "really skinny, like dying thin" "someone who hates themselves cause of magazines" "when someone thinks they are fat so they go on a diet but they aren't really fat"
I have a long list of quotes like that, all using the word "skinny" and referring to someone making themselves sick or magazines making someone have anorexia, not one person knew anorexia was a mental health condition, not one person knew about the voice, not one person knew you didn't have to be thin to be anorexic, not one person knew about the body growing a fur like cover or losing their hair, and not one person mentioned dying. How frightening is that? And all because the media, TV and schools do not do enough if anything to raise awareness, I had no clue what anorexia was until I had to know, now I am not saying it would have made things any easier for us had we known what was coming but we would have recognised Henry, we would have at least been armed with information and other people, our family and friends would also have been armed with information too, they say knowledge is power but without the knowledge how can we have the power.
I will fight until I no longer have breath in my body to help raise awareness of eating disorders and to try and dispel the myths surrounding them, to help people know how it really is, surely it would be easier to spot the signs if we weren't all looking for someone who is emaciated, being sick and thinking they're fat when they're not?
Conclusion & Fundraising With B-eat
If you have made it this far, thank you. Thank you from the bottom of my heart for taking the time to sit and read this post. I hope you may have learnt something from reading my post that you may not have known before. This post took me so long to write and I have changed it around a lot, I am sure I will have missed things but I have tried to include everything and I apologise if I have missed anything out.
During EDAW B-eat are holding their annual fundraiser, sock it to eating disorders, to take part all you have to do is wear your most outrageous socks and then upload a photograph to Instagram using the hashtag #SockItSelfie and tag B-eat in the selfie too. You can get your friends, colleagues and school and college involved too, all they have to do is put on a pair of socks, upload a photograph to Instagram or Facebook and tag B-eat and please also donate, there are lots of ideas on the B-eat website or check out the #sockitselfie on Instagram. Please try to help if you can, even if you cannot donate, sharing your socket selfie will help to raise awareness and get people talking about eating disorders.
If you feel you have learnt something by reading my post, please share the information, help others and I wouldn't usually ask, but please also share my post with your family and friends and on your social media platforms, the more awareness we can raise the better.
If you have any questions please leave them in the comments below and please also let me know in the comments if you have found this post helpful and if it has helped you be more aware and if you have learnt something or things you didn't already know.
I would lastly like to say a huge thank you to Simon who I couldn't have rode this ride without and to Lissy who it can't have been easy for but yet she has and still is always a huge support, to my family and friends, they know who they are, and to "Hattie" Rosa" and "Fiona" who without their support and friendship on the B-eat forums and to this day, I honestly don't know what I'd do, and lastly to the gorgeous Kate and Becky, two lovely ladies who have their own struggle but who have been and always will be amazing friends.
I will not let Henry win, he will not take our beautiful girl, who despite what she thinks and how poorly she is, is stunning and she is clever, witty, kind, loyal, talented, funny, generous and so much more than an eating disorder.
I am dedicating this post to my beautiful Cole who one day I hope and pray will be free and also to my lovely friend Claire or Claire Bear as I always called her, who sadly was not able to fight her demons and in the end, they won.
Our beautiful Cole
Where To Find Help
Website - https://www.b-eat.co.uk
Helpline - 0808 801 0677
Youthline - 0808 801 0711
Online Support - CLICK HERE
Message Boards - CLICK HERE
Website - http://www.mind.org.uk
Helpline - 0300 123 3393
Text - 86463
Eating Disorder Info - CLICK HERE
National Centre For Eating Disorders
Website - http://eating-disorders.org.uk
Helpline - 0845 838 2040
Website - http://www.seedeatingdisorders.org.uk
Helpline - 01482 718130
Anorexia & Bulimia Care
Website - http://www.anorexiabulimiacare.org.uk
Helpline - 03000 11 12 13 (option 1 support line) (option 2 family & friends)