This post contains information about anorexia & other eating disorders
& some images that could be frightening & EXTREMELY triggering for some.
A bit of background...
This week, 1st - 7th March has been EDAW or Eating Disorders Awareness Week, during EDAW I like to try and raise some kind of awareness of eating disorders, for friends and loved ones of sufferers and also sufferers too.
I do this because my eldest daughter Nichole, or Cole as we call her, has suffered from anorexia for 17 years this year, and when I first had concerns about Cole, I hit a brick wall when I tried to find out information about anorexia when I was absolutely terrified and didn't know where to go to seek help, it was extremely difficult, and had I had some info/guidance, I feel that, although it would still have been very hard, it might have made things a little easier to be armed with some knowledge.
I promised Cole and myself after not being able to access any information when I needed it most, I would always try and help to raise awareness in any way I can. Over the years I have volunteered on telephone helplines, email and forum type helplines, and the last few years I have written blog posts (you can find them here) and used my social media accounts to try and raise awareness and help others who may be in that frightened, desperate place I was in in 2004.
Before I begin, I would like to point out that I am not a professional. Also, the things I experienced and things Cole did/does and my advice is based purely on our own personal experience of anorexia as a family.
Right, let's get on with it!
This is going to be a very long post, apologies in advance.
Over the last few years, I have written blog posts about various different topics surrounding eating disorders and primarily anorexia, as that is what I have the most knowledge and experience of. In today's blog post, I am going to chat to you about Cole, about awareness and some research I have carried out for this post, and other things that may be helpful to know, and I am also going to chat to you about what I find is one of the least spoken about side effects of anorexia, but what myself and Cole think is one of the most frightening ones for the sufferer and their loved ones.
First things first, let me introduce you, if you're new around here, I'm Zoë and this beautiful young lady to my right as you look at the photograph, is my gorgeous little girl Cole. I also have a stunning younger daughter too, I'm a lucky mamma.
As I mentioned earlier, in 2004 there really wasn't any information out there when I was lying awake at night worrying about my little girl. Unfortunately, although there is more info out there now thanks to the internet, there still isn't enough awareness of eating disorders in the media, yes you can google facts and figures but there isn't anything from a personal perspective, raw emotion, no examples of what to look for, and if there are interviews with sufferers or loved ones, it's all edited and changed into sensationalised bullshit to get more readers or if it's a TV interview they just want numbers and weight loss photographs, they don't ask about signs and symptoms that nobody talks about and that may be scary for a sufferer or carer/parent, anorexia isn't a transformation Tuesday, it's a mental illness that kills more people than any other psychiatric illness and it needs to be treated as such.
A bit of personal research
Four years ago, I did some research for EDAW and asked my social media followers and friends and my family members who had no prior knowledge of anorexia, what they thought it was and what the side effects and symptoms of it were, how a sufferer might get treatment. The results were all pretty much the same. I decided that this year I would do the same thing and ask the same questions to friends/family and social media followers, and this time Cole asked her Instagram followers too. I wanted to see what results I got four years later since we're constantly being told so much more money has been put into eating disorders help and awareness.
And guess what? The answers were pretty much the same, four years later and there really wasn't much difference at all, which shows to me that there really isn't much more awareness, I have no idea why this is but it saddens me a lot.
Signs & Symptoms
I have spoken about this before, but just in case you are reading this and like I was all those years ago, frightened and worried sick about someone you love, I will share with you the things I first noticed with Cole and some other things you might notice happening too.
- Snacks lasting longer after doing our grocery shopping.
- Food packet reading, checking calories/fat.
- Comparing to others, especially celebrities & asking "am I as big as them?".
- Not wanting to wear certain clothes.
- Spending more time than usual in their room.
- Exercising or exercising more.
- Not really interested in things they usually would be.
- Saying things like "I'm so fat" "look at my legs, they're so big"
- Mood changes, being irritable.
- Weightloss, although not everyone with anorexia is thin.
- Using household scales a lot to weigh themselves - my advice would be to bin the scales if you have them, they aren't accurate, if you weighed yourself in every room in your house, you'd be a different weight in each room. Scales are for fish 🐟 end of.
These things are things I noticed in the early days before a diagnosis, after a while things changed up a bit and some other things I noticed both before and after diagnosis was.
- More extreme weightloss.
- Fine hair growing on the body, this is called Lanugo.
- Always cold.
- More moody especially around mealtimes.
- Periods stop.
- Hair loss.
- Dry skin.
- Looking pale, tired, unwell.
- Dizzy, fainting episodes.
- Becoming anaemic.
- Recurrent kidney infections.
- Low immune system.
A side effect nobody EVER speaks about & Meeting Henry.
The anorexic voice.
One of the symptoms of anorexia I had absolutely no idea about was the "anorexic voice" this is something I have NEVER seen spoken about anywhere, in magazines, television interviews, soap operas or fictional books. I haven't ever seen it mentioned anywhere and even now in 2021, it isn't mentioned on the NHS website.
The anorexic voice is a voice a sufferer hears, it is an inner bully, a demon that is controlling, nagging, nasty, hateful, it is something that is there 24/7 and sometimes even in a sufferer's dreams. The voice can be the sufferer's voice, or it can be another voice, some people will also see their anorexic voice, I once read a book about anorexia and a girl in the book described her voice as a green scaly monster with a big beak. The voice is a bully, and very controlling, it will tell the person they are worthless, fat, ugly, useless, they have no friends, everyone hates them, it is all-consuming and something you wouldn't want for 10 seconds, never mind years and years. The voice gets worse as a person loses more weight, the more poorly they become, the louder the voice will shout.
Coles anorexic voice has a male voice, she calls it Henry, Cole is one of the sufferers who see her anorexic voice. When asked to describe him, Cole describes Henry as very tall, around 7 feet tall, he is black in colour with fur all over him, he has spiky hair, red demonic eyes and sharp yellow teeth, Cole says they are like teeth of a monster. Sounds horrific, doesn't it? My little girl actually sees that and because I didn't know anything about the anorexic voice and neither did she, it was a very frightening experience when he first arrived at our house.
The first time Henry was mentioned was before Cole had been diagnosed with anorexia or even been to see a doctor, she wouldn't go to the doctors, I battled for over 18 months but she just would not go, and people said "I'd make her go" really? And how do you suggest I do that? The first time Cole told me about Henry was after a routine hospital appointment for her kidney condition, her consultant had noticed her weight loss and spoke to her a little bit about it.
We got home from the hospital, Cole burst into floods of tears, she buried her head into me and just sobbed, I cuddled her and then when she calmed down she told me she could see this "horrible man" she said he was a man but a monster too and he talked to her, he'd tell her "just lose one more pound, one more and I'll leave you alone" and he'd tell her he was her best friend and her only friend. He'd say that Simon (Coles dad) and I were putting things into her food, especially Simon as he does all the cooking, he would say we were liars, we didn't love her and he'd sit on her bedroom furniture and say "nobody likes you, your fat and ugly" in a nasty sing-song way. I was absolutely horrified, I stayed calm for Cole's sake but inside I was terrified, my daughter could see a monster that spoke to her 24/7, I didn't know what to say or do, I was frightened, for Cole and because I had no idea what it was and why it was happening.
For the purpose of my blog post today, Cole has drawn a picture of Henry, just his head, so you can see what she does. I have to warn you, it isn't nice and may be upsetting to look at, so you may want to scroll down a bit, but if not, this is Henry.
Isn't he vile? It isn't a shock for me to see him anymore as Cole has had to draw him quite a few times over the years for medical professionals, but I can imagine it will be quite a shock for you. I do still cry when I see Henry, and I write this with tears streaming down my face, I have never hated anything as much as I hate him, he is like a vile houseguest you wish hadn't visited and you can't get rid of.
Henry is still very prominent in Cole's head, sometimes he will be worse than others, but he's still there, in my beautiful little girls head and it absolutely destroys me every single day. Sometimes he's right in front of her, and sometimes she can see him out of the corner of her eye, she won't look cause she knows he's there.
Once I knew of Henry, I soon realised when he was around, especially at mealtimes, but most of the time too, Coles mood changes when he's around, and I don't detrimentally mean this at all, but she can be really nasty when he's around and I soon learnt whether it was Cole or Henry I was speaking to. It got to the point where I'd say "I'm not discussing this right now, cause this is Henry talk, not Cole" because it was him, he would be constant noise, going on and on and on in her head and she would then project that towards me and her dad.
I have no idea why the anorexic voice isn't spoken about more, but Cole and I both feel there needs to be awareness of it, it's a really scary side effect and needs to be out there, people need to know about it if you knew about it and your child came to you and you knew or were worried they may have anorexia if there was more awareness, it wouldn't be as harrowing, yes it's always going to be soul-destroying but knowing it's a side effect of the illness might help, even a little bit.
After opening up to me about the voice and monster she could see, Cole agreed to see our GP. I don't know why he's called Henry, lots of people ask us, he's just Henry, I asked her if she wanted to give it a name and that's the first thing she came up with.
A few days after me finding out about Henry, Cole went to the GP and of course, he diagnosed anorexia and referred her to CAMHS (child and adolescent mental health services) I remember thinking that that was it, we'd get the appointment for camhs and within a few weeks/months everything would be alright, Henry would be gone and my beautiful baby girl would be better and free of the demons she fought daily. I feel it is important for me to mention that the GP didn't know anything about the voice.
I won't speak about Coles camhs and child mental health services experience as I have spoken about it in previous posts, but it wasn't helpful, not at all, saying that no "treatment" has ever been effective for Cole, I think it's something that needs a really good shakeup, but that's a whole other story and something I think is for another day.
Things not to say & things that don't help.
When someone is suffering from an eating disorder or in recovery from one, some things just aren't helpful to say and things in everyday life that don't help at all, I thought it might be useful to know of a few, I have addressed this in previous posts but in case this is the first post of mine you have read on the subject and you're worried about someone, I'll touch on it today.
- Don't ever mention the persons eating disorder at mealtimes or around the table.
- Don't be patronising "you're so good eating that".
- Try not to be manipulated, sufferers are very good at it, if you have a meal plan, stick to it.
- Don't say "you look well" or "you look so much better" to someone in recovery, they will hear "you look fat" just don't mention it, even if you think it.
- Don't mention how thin someone is, and warn others to do the same, people have a habit of bringing up how thin Cole is and how she needs to eat some pies, it's not helpful, we know it's from a perspective of love, but it just annoys them and makes things worse.
- Don't ask what someone weighs.
- Don't ask how much someone eats.
- Don't use words like "naughty" "cheeky" "bad" "cheat day" around them, you are not naughty for having a piece of cake, you're having a piece of cake, it's perfectly normal.
- Don't ask about their anorexia unless they choose to speak about it, so many people ask Cole things, we understand it's quite rare to meet someone with anorexia but it doesn't mean it's an episode of Piers Morgans life stories.
- If the person opens up, listen, hug them and if you don't know what to say, then tell them, it's better to say nothing than the wrong thing.
- You're going to die, they honestly don't care, dying is better than being fat.
- Look what you're doing to your mum/dad/boyfriend/girlfriend/grandparents, they know, they see your tears, your frustrations, but the anorexia is much stronger than them, guilt-tripping them won't make them suddenly want to recover.
- You won't be able to do XYZ, again, they don't care, well they do, but not as much as they don't want to recover.
An example of not saying anything about size and something that happened to Cole last year, is, in January 2020 myself, Alicia and Cole made an appointment at a bridal boutique to go wedding dress shopping for Cole. The day before the manager of the store rang me to confirm the appointment, whilst on the phone, I spoke to her about Coles anorexia and the fact she is tiny and very underweight, I said that no doubt all the dresses would be too big, and please could nobody mention her size, or ask her about the anorexia unless she brings it up, which I knew she wouldn't. The lady was very sympathetic, she made a note in the diary whilst I was on the phone so all the other staff members would see it and there wouldn't be anything said. Telling Cole she is thin/tiny feeds the anorexia, Henry loves it, he's winning, he's getting what he wants, Cole sees it as a sign to carry on restricting her food intake, it's working, she must carry on, eat less etc.
The next day we went for the appointment, within about 10 seconds of the lady assisting Cole to undress and put the first wedding dress on, I heard "gosh aren't you tiny?" I looked at Alicia (my youngest) and we both looked at each other annoyed and in dismay because I'd asked for this not to happen. The lady continued to make remarks about Coles size the whole time we were in the shop, telling her "it's good she's so thin, she can wear anything" I wanted to say "yep like a body bag, if you keep going on" but I didn't I stayed calm and we left, but I decided I wouldn't be purchasing anything from that shop because I had specifically asked them not to mention anything, the lady who served us read the diary comments when we gave our name, I watched her do it, so there was no excuse. I also asked the manager discretely if she had passed the message on and she assured me she had. That is an example of what not to do.
A lot of people think that magazines and seeing models cause anorexia, and whilst it doesn't help, it doesn't cause it. Anorexia is a predisposed condition and if a sufferer has a family history of mental health or eating disorders, it is more likely they will suffer too. Magazines don't help, social media doesn't help, transformation Tuesday, before and after pics, pro anorexia crap, none of it helps, but it doesn't cause someone to develop anorexia.
Diet culture is the worst and I am going to write a separate post about it, but it is a nightmare for someone with an eating disorder, from September to December we are shown TV ads and magazine, social media stuff on all the yummy food we should be indulging in over the festive period, then on Boxing Day, its all Slimming World and WW, gym memberships, celebrity weight loss DVD's, ads for Slim Fast etc etc, it is all consuming, all across social media then a week later it's "new year, new me" and it is so triggering.
Another thing that doesn't help is clothes sizing and how much it varies, most shops sizes now seem to be getting smaller and smaller, I have clothes in my wardrobe from a size 16 to a size 22 and it all fits me. I always used to shop in Oasis and Warehouse all the time when my girls were younger, but now I can't fit into their clothes and I mean can't fit, I couldn't get a pair of their jeans past my knees. I haven't changed though, I have clothes from Oasis that fit me from years ago, but now I can't wear their items, it's madness.
A few days ago Cole was looking for some trousers on a clothing website called Bershka, I was horrified when she told me that their size XXS was a 21/22 inch waist! A 21/22 inch waist is the average size of a 4/5 year old child, what on earth is that about? I went on the Bershka website for some research for this post and their size 12 is a 24 inch waist, the average for a size 12 waist measurement is 30 inches, can you imagine buying your usual size 12 from there? You wouldn't have a prayer in getting it on, and for someone with an ED or in recovery from one, that could be catastrophic.
As you can see above, the Bershka sizing, XXS is 56 cm, this is 21/22 inches, below is a children's size guide from M&S, their size 56cm waist is for a 4-6 year old child, I used this as an example, some other places it was an age 3-4, but one thing for sure is, it is not adult size. And I am by no means body-shaming small build people here, I do understand that some people are very petite and that's fine if that person is healthy and that's their build. I am just explaining that when Cole saw the 22 inch waist on Bershka she automatically thought she was huge and it was extremely triggering for her, my younger daughter is a size 10 and recently bought an XL from Bershka, she sized up because the reviews said to, and it was too small, we now know why. This needs addressing, it isn't only Bershka, I am just using them as an example, this really doesn't help at all.
I could go on and on and I have so much more to say, but this post is already extremely long, so I'm going to wrap it up now, but I think I am going to come back with a post about diet culture, BMI and a whole host of other things I wanted to put in this post, but it's far too long already, let me know if you would like to see another post.
I wish I could end this post with a fairytale ending about how Cole kicked Henry's butt and how she is in a better place and recovered, but unfortunately, I can't. It breaks my heart that I don't have better news but the sad truth is that she isn't well, Cole doesn't want to seek help and because she's an adult, I can't do a single thing about it. We have an agreement that if ever I think I need to, I will speak about sectioning, I will not let her die, that evil bastard Henry is not taking my little girl. But for now, she isn't good, I won't speak about sizes or numbers, but it's not good. But please if you're reading this because your son or daughter is suffering, it doesn't mean because Cole is still fighting 17 years later, your loved one will be, there are lots of people who are in recovery, maybe one day it'll be my little girl.
Thank you from the bottom of my heart for reading this, I am really sorry it's so long, you didn't know you'd signed up to read War & Peace did you? All jokes aside, thank you, it means the world to me that you have read this, and I hope you have learned something you didn't already know about eating disorders, because if you have then it's been worth me speaking to my laptop, writing this until gone 5am a few nights, I have deleted bits, added bits and it's still probably just a load of waffle, but if my waffle helps just one person, then I'm happy.
I want to share with you a makeup look that Cole has created for this post and also to share on her Instagram too, she is extremely brave to do this because she is vulnerable and it took a lot for her to do this, I am so proud of her, this is Coles interpretation of having Henry in her life, the side effect nobody talks about, let's try and change that.
Instagram - @makeupbycole
Cole is so much more than her anorexia, she is an absolutely incredible makeup artist, she is beautiful, kind, caring, loyal, amazing at her job, she has a fabulous work ethic and so much more, we are so incredibly proud of her every single day, I will share some photos of Cole below, some from her younger years, some more recent, I love them all but one of my favourites is bottom right when she finally got to see polar bears in real life after adoring them for years and years, Cole has Aspergers Syndrome and one of her obsessions is polar bears, so this was such a special moment, just look at that smile.
Cole, if you're reading, me and paps love you more than you'll ever know, and we are incredibly proud of you, Henry is a teeny part of your life, he isn't what makes you, you. Love you so much AOSS MTS mamma and paps xxx
And to everyone else, thank you so so much for reading, if you've got this far, you deserve a medal, thank you, from the bottom of my heart.