This post contains wording, information and details of Anorexia Nervosa and other Eating Disorders which some people may find triggering.
I don't usually post on a Wednesday but this week is EDAW or Eating Disorders Awareness Week 2018 which runs from 26th February until 4th March 2018. If you are a regular reader of my blog or you know me personally, or both, you will know that raising awareness of Eating Disorders is something extremely close to my heart and although I campaign throughout the year, I always highlight the importance of raising awareness of Eating Disorders when EDAW comes round each year.
Raising awareness of Eating Disorders is something I will always do while I still have breath in my body, it is something I wish with all my heart I didn't need to do but our beautiful daughter Cole has been gripped in the clutches of Anorexia for 14 years this August and so raising awareness and trying to help other people in whatever stage they are of the eating disorder path, is very important to me.
Last year for EDAW I wrote an in depth blog post sharing my daughters story, today's post will be more fact based, some based on my/Coles experience also and other things, it may be
a bit a lot all over the place and I may repeat myself from previous posts but please bear with me, this is very difficult for me to write, but important that I do.
Why I am writing this?
14 years ago when I started to worry about my daughter, there wasn't any information available, I searched and searched and hit a brick wall every single time, it was soul destroying seeing my baby starve herself in front of my eyes and not be able to do anything about it. I don't ever want anyone to feel the way I did, and although I'm not a doctor or a professional in eating disorder awareness, I am a mum who's daughter has been in the grips of anorexia for almost 14 years and in those 14 years I have armed myself with as much knowledge as humanly possible so I can help her, and I also want to use that knowledge so I might be able to help someone else. Last year when I wrote my post on our story, I had so many people say that they had learned so much and I also had emails and private messages from sufferers and carers saying my post had helped them, and for me that means the world and it is the reason I am doing this today, if I help just one person then it is worth it.
Signs & Symptoms - Our Experience
One of the most asked questions I get is "how did you know?"
The first ever sign we had of Coles anorexia was aged 5 when I found her school packed lunches hidden under her bed when I was clearing out her room, I was expecting my youngest at the time and spoke to school, the health visitor and GP and was told it was probably just a reaction to the new baby coming, I accepted that, it fitted in with what was happening, little did I know it was the start of something much much more. The next time I noticed anything specific was her refusal to wear shorts on our summer holiday, she had turned 13 2 weeks before, it was extremely hot weather, and she flatly refused one day to wear her shorts because she said her legs were fat.
Even to this day, Cole hates her legs, and now she covers them in tattoo's in order to "make them pretty" in her words.
After the shorts incident we noticed things we were buying from the supermarket were lasting longer, and then we noticed Cole reading the food packaging and looking at recipes. Cole also changed, her mood changed, she wasn't the same child at all. She would say she looked fat or ask me if she was the same size as people at school or on TV. By the time the food packet reading and recipe reading had started, I had a gut feeling about it all. I just knew in my head she had anorexia, I had spoken to Simon about it and he said it was normal teen behaviour, he probably wanted to ease my mind. My mum and best friend said the same, but I knew, I just knew.
Some other things we noticed Cole was doing was over exercising, she was a dancer and used to practice in her room, this increased and increased. Cole would stand up rather than sit down, she thought this would burn more calories, she would use methods surrounding being cold ( I am not going to list these methods as I do not want to give any kind of "tips" to anyone) she would avoid eating things, she would all of a sudden "go off" something to avoid eating it.
I was told by the GP when I first asked to "watch her after meals, is she going to the bathroom?" but she wasn't, Cole hasn't ever made herself sick, I falsely thought this was a good sign, I didn't know then that not all anorexics make themselves sick.
Signs & Symptoms Of Eating Disorders - Professional Help
The Beat website has some brilliant information pages with signs & symptoms of all eating disorders, if you would like to check those out then just click on this link for all the information.
Worrying about someone you suspect has an eating disorder.
If you have concerns for a child or friend, relative, loved one, it is horrible, I remember vividly noticing things with Cole and being worried sick, as I said, I spoke to my mum and my best friend and they said it was probably her age and "all teenagers think they're fat" but I knew, I just knew it was more than that, I knew in my heart that it was anorexia. Unfortunately 14 years ago there wasn't the information out there that there is now, I couldn't find anything to help me, this is one of the reasons I do this, because I don't ever want anyone to feel as desperate as I did. But that gut feeling is there for a reason and especially as a parent you just know, and hopefully this post and my previous post will be able to help you.
It can be difficult to raise the issue of an eating disorder when you are worried about a family member, friend or loved one, we worry about how to bring it up, what to say, what they will say, will we offend them, will they fall out with us? It is really hard, the most important thing to remember before approaching the subject is that, it isn't the persons fault, they can't help it, it is a serious mental illness. I wasn't armed with any knowledge the first time I spoke to my daughter and I went about things totally wrong because of that, luckily I have spoken with Cole about the early days and she understands my lack of knowledge and despair. Simon found it harder than me in some ways, as her dad, Simon felt this was something he couldn't sort out or mend, and it was hard for him as usually dads sort everything out and fix everything and this was something he couldn't fix.
Ultimately because of this, our first conversation didn't pan out well, these are some things to consider before speaking to someone about your worries for the first time.
- Think about what you want to say beforehand and don't bombard the person with your worries, facts or information.
- Don't say things like "you're going to die" or "you're making me worry" "can't you see what you're doing to your mum/dad/loved one/friends" or use accusatory language, the person can't help it and you will both end up very upset and get nowhere.
- Try not to focus on food/weight other than a reason why you're worried, for example say a person has lost a lot of weight and you're worried, but try not to focus on it too much or speak about what the person is/isn't eating and how thin they look and don't compare them to celebrities or peers.
- Speak about things you're concerned about but don't list things you've noticed or say "you've been doing xyz" because they may feel "spied on".
- It is likely they will become defensive and angry, don't respond by being the same, try to remain calm.
- They may say there is nothing wrong, and maybe extremely convincing and it maybe that they don't realise they are ill, denial is considered a symptom of anorexia so trust your gut instinct, you were worried for a reason, keep an eye on them, make their school/college/uni or workplace aware and if they have a friend you can confide in and trust, speak to them or if they are younger and visit friends houses, speak to their friends parents too and explain your concerns, this way everyone is keeping an eye out.
- Don't try to talk before or after meal times.
- If they do accept there is a problem, make an appointment at the GP as soon as possible and depending on your circumstances go with them or offer to go along as support.
There are a lot of myths surrounding eating disorders, the media doesn't help these myths, some common myths are -
- All anorexics make themselves sick - Cole has never made herself sick.
- All anorexics/people with an eating disorder are thin - not true at all, someone can be very unwell and not "look thin".
- Families/Parents are to blame for a person having an eating disorder, there must be a reason - there can be reasons, and sometimes there is no specific reason, we were told Cole was pre disposed to anorexia having mental health in her genetics, there is no reason, which is hard to accept as we all want a reason.
- Only teenage girls get eating disorders - males get eating disorders too and females/males of all ages get eating disorders, some children as young as 6 have been diagnosed with an eating disorder, some people are teens, some adults, some pre teens, some middle aged, eating disorders have no gender or age limit.
- Eating disorders are a phase or for attention - they are a serious mental health condition and should be treated that way, always.
- People with eating disorders want to be thin - weightloss and restricting food are a side effect of anorexia and other methods surrounding food and weight are side effects of other eating disorders, it is NOT a desire to be thin.
The Anorexic Voice
The anorexic voice is one of the things I find most people have no idea about, the voice can be heard inside the persons head or something heard from outside. At first when the sufferer hears the voice it will suggest they will feel better if they lose a little more weight, but then it becomes much louder and much more critical, it may say that the person is weak for eating or a failure for not losing weight and it will threaten them with consequences should they try to fight the illness.
Cole calls her voice Henry, she hears him all the time, he will tell her that she is fat, ugly, worthless, that nobody likes her and that me and Simon are trying to make her fat and we want her to be fat. And not only does Cole hear Henry, she also sees him and he looks horrible, he is very very tall, about 8 feet, he is extremely thin, black in colour, furry and he has black spiky hair, red eyes and yellow teeth that are like a monsters teeth, he sounds delightful doesn't he? It breaks our hearts that our daughter can see that and hear it every day, Henry sits on Coles bedroom furniture swinging his legs and in a sing song voice he will say "nobody loves you, everybody hates you" and he tells her all sorts of horrible things, all of which are untrue. He tells her how many calories she is allowed to have per day, he tells her he is her only friend and the only person she can trust, that only he cares about her, he is absolutely vile and I hate him so much, it's like having a house guest that you hate and don't want there but you can't do anything about.
The first time Cole admitted she had a problem was after having a hospital appointment for a genetic kidney problem she has where she agreed with the consultant that she would see a doctor about her weight loss because he had noticed how thin she looked. She burst into tears, which for Cole is rare, she doesn't cry, she has aspergers and it's rare she cries, but she cried, and we cried too, and that was when she told us about Henry. It was horrendous, can you imagine your child telling you that when you know nothing about the illness as it is, it was awful.
Secrets & Lies
Eating disorders are often surrounded by secrecy and also by lies, sufferers will often lie to their loved ones and say they have eaten, they may hide food, and do other things. Luckily for us, with Cole having aspergers, she doesn't tell lies, this can be a double edged sword as she has openly told us things she has done to prevent eating. But it is worth noting if you are worried about someone, they may tell lies and be very secretive, not because they are being horrible or deceitful on purpose or because they don't care about you, it is part of the illness, they can't help it and often their "Henry" will have a lot to do with it.
Like anything, when people find out someone has a medical condition, they become a master of all knowledge, we have had some incredible advice such as "just take her to the doctor, there was a girl on Hollyoaks and she went to the doctor and got sent somewhere and is fine now" excellent, we'll do that then cause it's bound to be the end of it. Or we've had "I'd make her go to the doctor" or "I'd force feed her if she were mine" "Just get her to the chippy" "My next door neighbours, brother in laws, 85th cousin twice removed had it and they read this book and it sorted them out" all excellent advice I'm sure, but as frustrating as it is, try to remember that people are only trying to help and because it is a condition a lot of people don't understand they don't know what to say, so my advice would be to nod and smile and try to remember it is said with the best intentions.
Everyone Is Different
Having a child or loved one with an eating disorder may mean that you connect with other people who are or have been in a similar situation to yours, try to remember that we are all different and people recover at different times, it is heart breaking and brilliant when a friends child begins recovery or is in recovery 12 months after starting and they have stayed in recovery, you feel so elated for the sufferer and their family and friends but at the same time almost jealous because it isn't you and your child, but we are all different and one day I hope that it will be Coles turn and I'll be that mum who is ecstatic but for now it isn't our time.
I remember going to that very first GP appointment and them diagnosing Cole with anorexia, the doctor said he would make an urgent referral to CAMHS and I remember feeling absolutely brilliant and thinking that it would all soon be over, I feel stupid now, almost 14 years later and Cole worse than she was then, because I didn't know anything and I just assumed that was it, the magic CAMHS who would sort it all out. I do know now that it is natural to feel like that and if you have felt that too at least you know you're not alone cause I did.
YouGov recently conducted a survey of young adults in the UK about their knowledge when it comes to spotting the signs and symptoms of an eating disorder. These are some of the results -
Every year for EDAW B-EAT have a different campaign and this year for 2018 their campaign for EDAW is the Why Wait campaign, they are focusing on the time between the signs and symptoms of an eating disorder emerging, and people finding help, which is, on average, three years. You can find out all about the Why Wait campaign and how to get involved if you would like to on the Beat website.
Things NOT To Say
It is very hard to know what to say to someone with an eating disorder or someone in recovery from an eating disorder and it can feel like you're treading on eggshells, these are some of the things not to say to both someone suffering and someone in recovery.
What NOT to say to someone in recovery
- You look well - they hear "you look fat".
- You'd never know you were ill now would you.
- So don't you make yourself sick now?
- Do you eat what you want now?
- So can you come for a meal now?
Steer clear from the topic of food, weight, how someone looks. If you have to say anything just say you're proud of them and you're always there for them if they need support, or ask them what they would like you to do and ask what they don't want to hear, it's better than saying the wrong thing.
What NOT to say to someone suffering from an eating disorder
- Oh I could do with some diet tips for my holidays.
- How many calories do you eat in a day?
- What do you weigh?
- What do you eat?
- So when you look in a mirror do you see a fat person?
- You're not fat (their anorexic voice will say you are lying).
- I wish I had your stamina, I'm always starving.
- You're so lucky, I look at a cake and put weight on.
- Aren't you hungry?
All these things have been said to Cole and some in the last 3 months, common sense would say, don't say certain things, but because there is such little awareness people just don't know what not to say, this is why raising awareness is so important.
How Is Cole Now?
I wish with all my heart I could tell you that Cole is in recovery and doing well but unfortunately she isn't and she isn't well at all, she is very underweight and I honestly don't know how she stands up most days, Henry is very much in control right now and he is the house guest we really don't want, Cole knows that both Simon and I are there for her and always will be and that if she ever wants to get any kind of help, we will be with her every step of the way but unfortunately for now, she doesn't want that help.
How can I raise awareness?
I get a lot of questions about this, and it is so easy to do. Unfortunately schools and colleges don't educate regarding eating disorders in a way that actually raises awareness, TV shows and soap operas never show how it really is and they always show a person going to the GP, getting a referral and then getting help and being recovered within about 6 months or sooner. In reality in the part of the UK I live, there isn't any NHS help for eating disorders, not any at all, it is a post code lottery so say for example, in London there may be NHS clinics or Birmingham but in Liverpool there might be nothing, it is wrong but it is how it is I am afraid and where we live there is nothing at all, we have to be referred to a private clinic and then hope and pray that the PCT will fund the treatment, which costs thousands of pounds, it is awful but the harsh reality, there is just no NHS funding in many parts of the country and some sufferers can be placed hundreds of miles from their families.
You can raise awareness by simply speaking to a friend, partner, family member, colleague, someone on public transport, anyone at all and bringing up the subject and then chatting about it, if you have learned something from this post or my previous posts then maybe tell them a fact you've learned, you never know, they may then pass it on and that's how you raise awareness, it is so easy and the more people who know how eating disorders really affect people the more awareness there will be and parents/carers/friends/loved ones will be able to spot the signs and symptoms sooner.
You can also get in touch with Beat they have a Get Involved page on their website and you can request leaflets and information to leave around your school, college or workplace too. It is easy to raise awareness, I have been and will continue to Tweet 2 tweets from my Twitter account with a fact about eating disorders throughout EDAW, please re tweet those tweets and like them, that way more people see them and again, you are spreading awareness. There are lots of ways, and it's free too and your conversation or re tweet could be life changing for someone, how amazing would that be?
Last years blog post - EDAW 2017 Our Story
Thank you so much if you made it this far, I know this is a ramble, and it is probably all in the wrong order and I've probably waffled on but thank you so much for reading this post, it means the world to me, and thank you so much to everyone for all your support with my fight to raise awareness and for your concern for Cole, it is very kind and means a lot to me and Simon and to Cole too.
If you have just started on your path as a carer or sufferer and don't know which way to turn or if you've been fighting for a long time like me, what ever the circumstances, if you need someone to talk to, I am always here, my email is firstname.lastname@example.org please drop me a line, don't feel alone.