We are not who you think we are

Disclaimer and health warning: I have been careful not to use pictures of myself in clinic/hospital settings as not to cause harm or offence, however some images and language are used in this post which have the potential to trigger. If you are easily triggered, please do not read on.

We are not who you think we are

7-8 years…

The length of primary school education

7-8 years…

The length of time it takes for all of the cells in your body to regenerate

7-8 years…

The length of time it takes for your body to fully digest chewing gum (?)

8 years…

The average duration of Anorexia Nervosa

It’s world mental health day today, you’ll probably see the odd blog post floating around, the odd share on Facebook, the odd “fight on” hashtag. Before you scroll past, please think about what World Mental Health Day actually means. You may be reading this out of curiosity, wanting to help a friend, or simply desperate to grasp onto some sort of hope that someone else understands. Whatever your reason for reading this, I can guarantee you’ll have had an experience, even through a friend of a friend or the media, of mental health, because sadly, everyone knows someone.

“You’ve got a lot on your plate, haven’t you?” I laughed. Quite the opposite really, but thanks for the concern. Eating disorders are such a difficult illness to write about, because they, for most people, are not what they are portrayed to be. Most don’t conform to stereotypes; most don’t fit into a 6 stone frame of a teenage adolescent or have a tube wedged down their throat. We all know the basics; Anorexia means you starve yourself, Bulimia means you throw up food and Binge Eating Disorder, well that’s just greedy, right? So wrong.

If I had never been whacked with the crazy stick (am I allowed to say that?), I would never know first hand what an eating disorder feels like. For me, I had Anorexia Nervosa (restrictive subtype) with bulimic tendencies. Wow, where’s my medal? Eating disorders come in many forms and, shock horror; many do cross over. The body of an eating disorder patient basically becomes a calorie-excreting firearm. Of all psychiatric illnesses, Anorexia is the deadliest, with the highest mortality rate. This is a mixture of medical complications, as well as increased risk of suicide. Although I was horrendously underweight at referral point, it is so vital that people understand you do not have to be a walking stereotype to have Anorexia, or any eating disorder. Eating disorders are mental illnesses. It’s a disorder, which becomes a compulsion that you can’t control.

“I did not develop an eating disorder because I couldn’t cope with our media saturated culture, I developed an eating disorder because I couldn’t cope with my life. I did not develop an eating disorder because I hated my body; I developed an eating disorder because I hated myself. I did not develop an eating disorder because I wanted to be like a model; I developed an eating disorder because I wanted to be anyone but who I was. I did not develop an eating disorder because my mind was filled with images of photo-shopped girls; I developed an eating disorder because my mind was genetically predisposed to mental illnesses like anxiety and depression. I did not develop an eating disorder because of culture. Eating disorders are illnesses, not a cultural phenomenon.”

5 types of Eating Disorder

Anorexia

Bulimia

Binge Eating Disorder

Eating Disorder Not Otherwise Specified (EDNOS)

Disordered eating/eating problems

Let’s clear up these stereotypes. "97% of eating disorder patients are found to exhibit at least one other psychiatric illness such as depression, an anxiety disorder or substance abuse." Often, eating disorders are an expression of these illnesses and the “weight loss” that is so kindly battered around by the media is actually just a side effect. Obviously, nothing occurs without the influence of multiple factors (think nature vs, nurture). Environment, culture and biology are probably something to do with the illness. Eating disorders are not about food; sufferers are hungry for so much more than that.

So, why can’t you see eating disorders? Take breast cancer, for example. You cannot necessarily see the effects at diagnosis, but the symptoms are there. Someone who is depressed can force themselves to smile and laugh. Even an anorexic does not have to be medically underweight to be suffering. I’m not saying that someone who struggles to eat for a day or two is anorexic, because that is just not the case (but let’s save the rant about self-diagnostics for another post). If you pass a mirror, it’s game over, whatever your weight. You feel desperately low and you feel trapped by the rules you have created for yourself, whatever you look like on the outside. It is so important to break the stigma that you have to look like a walking skeleton to have an eating disorder.

Below are three photos of me, and although none were taken at my lowest weight, I was very ill in all three of them, in mindset (although the last was celebrating eating something I hadn’t had in years, so I was feeling pretty proud of myself there).

                        

5 things I have learned from having an eating disorder

1. Recovery is quite literally like being in rehab for drugs, but it's 100% worth it 

Starving yourself and using eating disorder behaviours is honestly like ecstasy is to a drug abuser. And apparently (because a bit of science is healthy now and again), Anorexia and ecstasy actually activate some of the same brain pathways. So there you have it, maybe you are in the wrong clinic (joking).

2. Nothing is a race, take your time. Likewise, don’t compare your journey

It’s difficult not to compare yourself or your journey to others when you have an eating disorder. The illness is so competitive, I remember slyly comparing the amount of raspberries I put into a “smoothie” in one of our sessions with another patient, as well as the amount of sprays in a pan to make pancakes (which was Fry Lite anyway so it doesn’t even count, just saying). Everyone is at a different stage to you. That goes for general “lifeyness” as well.

3.  It’s ok to be a perfectionist, as long as you channel it correctly

It’s no secret that people with eating disorders are flipping competitive. We thrive on competition to fuel our illness, that’s just the way it is. “You know you can never be as cool as they are, but when one of them pops a potato chip into their mouth or chooses real Coke over Diet, for that moment you are better”. This is horrendously unhealthy. However, when I was ill, someone very special to me told me that I needed to put the same energy into getting better that I did into self-destructive behaviours, and that, is honestly one of the best pieces of advice I received, because that’s exactly what I have done. You will soar, I promise you.

4. Accept a compliment – it’s good for the soul

Literally. It’s mega cringe and hard at first, but just do it. I dare you. (Or give one, that’s always nice).

5. To appreciate the things that I have no control over

Life is a lovely little whirlwind sometimes, isn’t it? But what can you do? Enjoy and embrace it, that’s what. But equally, recognise your negative emotions, honour them and move on.

5 things that we want you to know, but probably won’t tell you 

1. Every single day feels like a time loop 

We literally have to reset ourselves. Someone may as well come and stand at the end of the bed each morning with a sign saying, “Do you want to carry on recovering today?” Because it literally is that invasive, you have to make the decision over and over and over again. Despite how painful, despite various environmental factors being shoved down your throat (pardon the pun, humour has become a necessary protective strategy in my more serious blogposts)...

2. "Fat" is a metaphor 

For me, my fears over food did not develop over a feeling that I was fat. It was only when I began to lose weight did I feel that “fat”, which is, essentially, an emotion. It is not uncommon to hear someone say, “I feel so fat”. This can simply mean, “I feel overwhelmed” or “I feel out of control.” But still, talk to them, don’t assume.

3. We are incredible liars, but we don't mean to hurt you 

We are the best liars in the world. We will do anything to hold onto a sense of “control”. As for people, we firmly place them into categories. Those we trust, those we don’t, those we can confide in, those we can lie through our teeth to. But the reality is, we are lying to and hurting ourselves the whole time.

4. We are not "over-sensitive" 

Our feelings are extremely real to us.

5. We are so sorry 

Anorexics are perfectionists. We like to think we are super-humans…we’re not. Having Anorexia is like being in a room with 20 radios, all on different channels at different volumes; white noise and all. You know that you are hurting yourself, but you can’t stop it. The more weight you lose, the bigger you feel. Science, hey? You don’t mind if you die, you push it to the limit. You think that everything will go wrong if you eat and you feel horrendous if you feel you’ve eaten out of your own will. Someone watching you eat? That’s just completely out of the question. We are also extremely competitive; if I haven’t already mentioned that…We are so sorry to those we hurt when we were poorly.

5 comments/mindsets that are extremely unhelpful 

1. "Aren't you looking well?" 

We hear, “aren’t you looking fat?”

2. “I’m glad you’re eating more” / “That’s not enough”

3. “That’s not healthy” / “That looks healthy”

4. “I’m glad you’re getting over this”

5. “People are starving in other countries, you shouldn’t be wasting food”

Please don’t add to our guilt. We know. Just don’t comment on our food, or us please. (Saying that, I am at a stage now where it is nice to hear how well I look – it’s different for everyone, at various stages).

5 misunderstandings that we need to talk about

1. "Wow, if you think you're fat, I dread to think how you see me!" 

Many of us have body-dismorphia and these thoughts and self-hatred stop at us. Please do not put us in a position like that, it's awkward for everyone. 

2. "So, do you just, like, not eat then?" 

Wasn't anyone listening in GCSE Biology? It doesn’t take a genius to work out that you need some food to survive. Most of our behaviour is secretive.

3. "But you were doing so well?" 

…and now I’m not. Funny that isn’t it!

4. "But you don't look like you've lost weight?" 

An actual teacher said this to me when I wasn't displaying symptoms at first. True story. 

5. "Are you recovered/better now?" 

Just because someone has gained weight or has been discharged, does not mean that they are instantly "better". I explain treatment or a care plan as similar to a big operation, when you are discharged or "come round"; that's where the hard work starts. You wouldn't expect someone to get up and run after major knee surgery, it can often take years to rebuild and strengthen after a procedure so complicated and delicate. 

5 pieces of advice I would give to someone suffering

1. Your BMI is not and should never be an object 

You do not have to have a BMI of 11 to get help, and equally, you do not have to be a certain BMI to have an eating disorder.

2. Don't listen to doctors who tell you to "wait and see" 

We all know that is the most ridiculous piece of advice a medic could give you. Wait for my death? Ok then. Don’t wait until you are “sick enough”; you are worthy of help NOW.

3. Early intervention is so vital 

I have so many health problems now because I didn’t get help early and I left it until it was too late. Please get help as soon as you can. There will always be someone, even if you have to go through a few different people first. Don’t be put off by adult services either; I found them SO much better than children’s services. They aren’t as scary as you anticipate them to be, I promise you.

4. You are not strong even if you feel it 

“Why on earth would I want to recover? It took ages for me to get that tiny”. I know, I know. But you’re not strong for restricting, you’re sick.

5. Read a lot of literature 

Something that encouraged me when I was about to recover was understanding the illness in order for me to move on. If you can and are able, do your best to read to understand yourself. After all, you’re doing this for you, no-one else. Just make sure you don’t read it to trigger yourself though (how did I read your mind?)

5 pieces of advice I would give to someone in recovery 

1. Get rid of clothes that no longer fit, seriously 

This is liberation to a whole new level, I’m telling you.

2. You either recover, or you die 

Eating disorders can only be “maintained” for so long. They are a suicide mission, not a way of life.

3. Try your hardest to ignore the competitive aspects of the disorder 

The reality is, a lot of people wish they had been “better” at losing weight than you. A lot of people wish they had been “better” anorexics. There are better anorexics than you, but they’re dead.

4. Making yourself sick is so, so dangerous 

(I completely understand that it doesn’t make you want or feel the need to stop, but please listen to those around you). You actually only purge around 1/3 of the food because you push the rest further down, and even then, you’re actually getting rid of the most essential nutrients. And plus, you always feel pretty rubbish afterwards.

5. You can't make up the rules as you go along 

I remember when I first ate again, I thought to myself “Ok, if I eat that then I’ll just make up for it later” or “I’ll have this now and then later I can just have half my dinner” - It doesn’t work. Unless you fully hand over the reigns, disordered thoughts will rule your mind forever.

5 pieces of advice I would give to someone wanting to help 

1. Do your best to research around the disorder in order to understand how they are feeling 

It can be so hard to talk about emotions surrounding food, especially initial conversations. This will take so much pressure off and be a good conversation starter. Get to know their “safe foods” and their triggers.

2. Don't be confrontational 

From personal experience and generally speaking, meal times are never a good time to talk. It makes us feel stressed and puts focus on the thing we are struggling with, consequently, putting us right off our meal which we could have been psyching ourselves up about for hours.

3. Eating disorders are complex, do your best with what you have 

There could have been nothing to trigger an eating disorder or a whole reel of trauma. Be patient and be kind.

4. Therapy is so draining. Give the person space to think and wind-down afterwards 

I used to come out of therapy sessions with a banging headache nearly every time. Especially during the “assessment” process, which can often take up to three hours. It hurts your mind and is painful to bring up suppressed memories. Be supportive, drop a text or offer to go with them.

5. Use your common sense and be careful with your language 

Avoid using statements such as “you are making me worry,” instead, use ones such as “I’m worried about you.” Imposing more guilt will just make the person shut down more. Even months or years into recovery, there are still aspects of food I struggle with. For example, food shopping for me can trigger a meltdown if I’m in the shop alone or can’t find what I need. Additionally, support during the actual meal is often essential, despite how long someone has been recovering for. Don’t be patronizing, just use your common sense. If you’re eating with a large group, offer to sit near or next to the person, or use a code word so that they can have a breather if necessary.

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It’s hard to see the wood through the trees when you’re in recovery as there is not an awful lot I actually remember from when I was poorly (starvation tends to have that effect on the brain), however I hope with all of my heart that this post has at least increased some of your awareness. I’ve gained an awful lot since I was diagnosed. But I can tell you this with confidence; I’ve gained so much more than weight. I have gained body fat, bone mass and health. I have gained femininity and self-assurance. I have gained back my personality and the ability to feel rational emotion.

Thank you to everyone who supported me when I was poorly and continues to do so through my difficult days, you know who you are x

Some useful websites:

https://www.b-eat.co.uk (Well known, but don't underestimate this one).

https://www.nationaleatingdisorders.org

Mental health literacy:

http://www.nedc.com.au/communicating-about-eating-disorders

Some useful books:

-       An Apple a Day – Emma Woolf

-       Goodbye ed, hello me – Jenni Schaefer

-       Unbearable Lightness – Jodi Picoult

Food to Eat: A helpful recipe book to gain confidence with food

https://www.amazon.co.uk/Food-Eat-hopeful-disorder-recovery/dp/1480083461

 ♥