My TEDxYouth talk: Eating disorders have no face

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Invisible.

‘Your condition was very acute’. The words my dad and step-mum said to me last weekend, such an innocent comment so why has it upset me so much?

Yes I want to be better. No I don’t want people to see me as disordered. Yes I’m glad people see me as a smiley person… but sometimes I want my struggle to be acknowledged. Is over 6 years of my life being overshadowed by an eating disorder simply acute? I can understand that only the beginning of my disorder is remembered by those around me who only saw the external weight loss… but does my dad not know that things have never really got better? The discomfort and hatred I feel towards my body has never faded, nor the whirring calorie calculator in my head, I have never felt fully recovered so why is it assumed that I am? The voice of an eating disorder inside my head has silenced my real voice.

The day my dad said this to me, I reacted by purging my lunch. It was almost like a vain attempt to prove that things hadn’t got better and that I am ill, chronically ill. Of course i didn’t tell him I did this… just as I won’t tell him that this evening  I have binged and purged 3 times within a few hours,  I entered a subconscious zone opening cupboards and the fridge to satisfy my unsatisfiable stomach. Then regret, guilt. Then self-induced vomit.

The problem is that this dominating part of my eating disorder is secret, I can’t admit to this disgusting habit so how  can I expect my dad to know the torment I go through. He can’t see that food is not enjoyable, it is a substance that may taste nice but it is also a substance that provides guilt.

I don’t want to be an ‘inspiration’, I don’t want to be ‘strong’ because I’m not either of these things. I have not beaten my eating disorder and if the way I live my life is what others aspire to have then that would make for a melancholy world. I am lucky to live with my mum who has been there by my side for the past 6 years, who has seen that the eating disorder’s grip still hugs me tight, and she doesn’t assume. If you know someone who struggles or has struggled with their relationship with food, don’t assume, allow them define where they are on their journey, allow them to struggle if they need to and make sure you support them if you can.

 

Diffusing pain

It is easy to lose sight of those around us, the thoughts and feelings of a disorder or illness can drive an entire existence. The brain hosts a daily war zone between negativity and attempted rationality. This battle overshadows a perspective outside a tunnel of vision, pushes aside family and friends, believing that they don’t care, that they will never understand, and cannot be allowed to cross a line of danger, into the war that exists internally.

This is something that the individual struggling must become aware of themselves, for there is truly always someone that cares. Even through a swarm of bullies, disrupted families or poor relationships, there is someone. It may be a stranger, it may be a forgotten friend, but do not forget, that although the pain felt may not be identically reflected within another, the pain does diffuse through a society. Onlookers to the destruction that loved ones inflict upon themselves, feel helpless and live their own turmoil, in a world of anxiety, stress and fear that the one they care for is endangered by mental illness.

Recovery is a long process, sometimes unbearable, sometimes it means taking a few steps backwards before leaping ahead, sometimes it involves feeling like recovery is possible, and then falling suddenly, right back into the grips of a mental illness. But recovery isn’t just about regaining a life for oneself, it is regaining a life for everyone around you. My words have no intent to place guilt on someone struggling, because not a single sufferer (or as I prefer to say; recoverer) is to blame. I simply wish to state, that even if one’s suffering only affects one person, their stress will diffuse to the network surrounding that person, which in turn affects their network and so on. A majority of humans by nature, wish to empathise and will consequentially wish to tend to the pioneering pain that the recoverer feels. Mental illness fundamentally affects an individual, but also family, friends and a society through a process of diffusion.

Recovering but not recovered.

So how does it feel to be in that limbo of ‘okay’, but not good? In recovery but not ‘recovered’ from Anorexia Nervosa? When nobody can see the struggle because you look well, yet even when you try to explain it or reach out, people turn away. When a world of restriction turns upside down, it becomes a realization that food tastes good, that recovery is worth it, but one does not know how to accept this. Food has been the perceived enemy for so long, the thing that causes the dreaded weight gain. This limbo of recovery provides sudden clarity, that an eating disorder is not about food, weight and shape, but at the same time it is all about food, weight and shape.

Recovery can occur in a variety of ways, it can include one minute of being adamant that one will lose 5kg, but the next decide to eat well, be ‘strong not skinny’. It can include a sudden gorge on all the foods that one has deprived oneself of for so long. It can include this gorge to bring up so much guilt, that one transitions to a diagnosis of bulimia.

I apologize for a more personally written post, but if one person reads it – I hope to feel some relief to finally share my constant whir of thoughts… I am recovering, not recovered.

Every day, I remember lying in that hospital bed, completely confused as to how I got there, but totally aware of my body sinking into the bed. The smell of paper towels, the smell of fortisip supplements staining my mattress and skin as I tried to hide it, the humiliation of shitting myself because I took too many laxatives. An NG thrust through my nose as I screamed and cried. Friends and family visited and left crying, but all I felt was numb. I could not cry, because I didn’t understand. I hadn’t reached my goal weight, so how could I be ill or underweight? The only comfort I felt, was that my heart rate was at 29bpm, I felt like I’d achieved something, in some sick way that I still don’t understand.

The worst memory is seeing my mums face, when she told me I had a month to live if I didn’t accept treatment. That image will never leave my memory, how much I’d hurt her, knowing now the turmoil I put her through. So I was flown to London to an ED inpatient unit. I now cannot stop thinking, how every other weekend she lost her free time off work, to fly to London and take a train to see me just for a few hours. How she lost weight herself because of stress, and how she had no time for herself, yet all I felt at the time was jealously, that I was in a unit to gain weight and she was free to lose weight. How I still returned home and put her through hell, hid food, deceived her, shouted at her, made myself sick in front of her, sat staring blankly as family members cried when I wouldn’t eat, avoided good hygiene, touching toilets in the hope of catching a vomiting bug, all for what? To lose weight. To somehow achieve the unachievable.

The guilt never fades.

Every day I’m so conscious of my body, noticing every jiggle, all the loss of muscle because my weight goes up and down like a yoyo, muscle is the first to go so I never sustain it… constantly comparing myself, never being thin, but not even looking slim because I’ve lost the muscle. Depression sinks in. I just sit or lie in my bed for hours. Even though my bmi remains on the cusp of healthy – I only see the fat I’ve obtained from lack of activity, so I just look a normal size, leaving everyone oblivious and confused by my distress.

Nearly very night for the past 3 months, I have binged and purged. Purged so violently that my throat has not stopped burning, I have grazes on my knuckles from my desperation, burst blood vessels around my eyes, under my tongue and down my cheeks and neck from the straining to get out every last morsel… my teeth are starting to recede as the acidic vomit has worn down my gums. My fingers are stained with smell as I’ve pawed through my vomit just to make sure I’ve purged everything. Further memories are triggered of going into every food shop in a train station, spending over £50 on food because my friend hadn’t turned up, knowing full well I was going to purge it all in the station toilets.

I hate myself every day. Not just for looking the way I do, but for not being strong enough to recover, for having 5 years of my life taken from me and ruled by thoughts and calculations of calories, weight, shape and body.

For what I’ve put my mum through.

I have remained a healthy weight for a large percentage of this time, yet these times have been the worst – because everyone thinks you’re over it, that you’ve come out the other side, but it’s just a hidden demon. A dirty secret that nobody wants to hear, because loving food is normal, but having a life ruled by it’s dictatorship is not. A life where the number on the scale or the reflection in the mirror each morning, is what defines whether a day is good or bad.

Each day, my thoughts are about food, weight, calories and how I look. I wander around food shops the majority of the days, just to look at food I wish I could eat, trying to tell myself I can do it but if I do, I know full well I will throw it up. In the eyes of the unknowing, I am healthy, I look like a normal 20 year old. Yet I cannot concentrate, unless it’s about what I have eaten or what I will eat that day. I cannot shift the memories, I cannot let go. Oh I so want to let go, if only my eating disorder would let me go.

So you think you’re special?

It’s within human nature to want to stand out. Even through the need to fit in, there emerges a desire to have some personal quality or achievement that is special, above all those around you. After reflecting on a difficult couple of weeks, I come to the same conclusion I have before, time and time again. One overriding barrier to my own recovery is this need to excel or stand out somewhere or somehow. Society puts pressure on every young person and adult to talk about qualities of themselves, to talk in a way that puts them above the rest. But what if you have never found that thing that puts you ahead?

Being average in intelligence, average in personality, average in socialising, average in looks, average in sports, average in arts, average in drama, average but never outstanding. The list of mediocre qualities never ends. So perhaps this sense of never being good enough is the weight that forever causes doubt in the ability to recover, to find oneself, to feel confident to face demons. Yet mental illness is debilitating, scary, and just as fatal as any physical illness, so why would I, or anyone want to hold onto it?

I think too often, that an eating disorder is the only thing that makes me different to anyone else, even as weight restored – somehow I want it to be ‘my thing’, to the extent I almost self-sabotage my recovery, so I don’t lose the safety net of my identity. It can be the same for depression, having changed my nature and outlook so much, that I fall back on it as ‘who I am’, in comfort of a fear that I am not enough to be ‘me’. Perhaps mental health and talking about it is all I have to offer? But one should not forget; mental illness is not unique, it is not special, in fact it’s one of the most prominent and common factors in society. The reality is, there will always be someone better than us at something, one cannot strive for perfection, but instead can strive for progress. Our lives aren’t meant to look like anyone else’s, our journey is our own and that journey in itself, with all it’s paths, obstacles and goals is what truly makes us unique.

For so long, I have hidden behind my diagnoses, identifying myself by their name and not my own. I think it’s time to change.

Christmas cheer & tears, chaos & calories

Christmas is upon us, a day known for merriment, family, laughter and food. It marks a special occasion not only for religion but for bringing a society together, where our charitable inclinations increase and acts of kindness are abundant. However, behind all this, there is a hidden world, where the idea of Christmas can represent an occasion of fear, anxiety and ambivalence. For those with autism, the lead up to Christmas can be a bizarre concept; for not everyday is Christmas so why are we decorating, advertising and exciting ourselves? For those with social anxiety, the idea of a room full of people, shops swarmed with the last minute purchasers can initiate the physical and emotional feelings of panic. Depression has leached the enjoyment out of life, and that doesn’t change for this one day out of 365. Christmas may evoke feelings and memories of pain, loss or abuse, everyone has an individual story to tell and it cannot be assumed that this festive season is jolly for all.

The intense focus on food is particularly challenging for one with an eating disorder, the fear of family members piling calories onto your plate, adding up to what is no longer a serving of nourishment or pleasure, but a numerical, quantitative pile of anxiety. Eager family members laughing around the table, looking expectantly for satisfied faces and yet the disordered response is a tentative one, avoiding complimenting the food due to an infestation of guilt that one could simply allow or accept that they can enjoy this nutritional necessity. The whole day becomes a nightmare of thoughts- resulting in tears, binges, purges, restrictions, anxiety and self-doubt, to a point that the very acceptance of presents becomes a guilt-driven activity. After the mechanical action of eating, the anxiety doesn’t dampen easily, the day will hold fears of having eaten too much, gaining weight, continuing to eat uncontrollably and results in a day lost in a world of clouded vision, an unintentional, self-centred bubble of worry and rumination.

Even if someone is struggling, people can be helped to find enjoyment from Christmas. If you have a loved one who is struggling in any way with this holiday- talk to them before the day. Put a plan in place. Whether it be discussing the meal with them, choosing certain foods, firming a safe place they can go if it’s overwhelming and reassuring them that it’s ok to need to ‘escape’ the family laughter and loud jokes. Make sure that person knows who they can talk to on the day, make sure they feel safe, that they know they are cared for and that even if they just show their face for a short while, they deserve to enjoy Christmas. Whatever an individual likes about Christmas, get them to focus on that and even if it’s just for a moment. Christmas holds some universal enjoyment, and please remember if someone is withdrawn at Christmas time due to mental illness, it is never their fault.

Boundaries

Diagnosis of mental disorders is a topic of discussion among many psychiatrists, psychologists and doctors. Which symptoms are vital? Do they all fit to give a reliable diagnosis? There is so much quantitative questioning and effort to fit people into boxes that we almost forget that there is a real person suffering behind all these numbers of length of symptoms and severity.

What I find increasingly difficult is to distinguish my own thoughts, feelings and behaviours of which I show and feel normally from the thoughts, feelings and behaviours that are triggered and caused by my own mental illness. It is so easy to become wrapped up in your own world and hold on to a diagnosis that from everything that happens, you may now attribute everything that you think or feel down to having a mental illness.

For example, when does feeling overwhelmingly tired, without even the energy to move from the sofa or hold a conversation due to lack of concentration become just a day where you haven’t had enough sleep? When does crying over the smallest thing become a temporary hormonal imbalance? When does coming home, slamming all the kitchen cupboards and swearing for no reason but being irritable just become a long or hard day at work or a result of stress? When does behaviour really become something that one can call a mental illness? After all; every single person on this planet has bad days.

Perhaps what we should focus on, is not the title given to an individual such as ‘clinically depressed’ but rather we should open our eyes to what is around us, see that we aren’t really alone, everybody will find it difficult when a close family member becomes very ill, when one has a bad day at work, they are unemployed or break up with their partner so we can’t use being ‘mentally ill’ as an excuse to our thoughts, feelings and behaviours in all situations but we can of course say that these events may come with a little extra difficulty on a more fragile mind.

This may seem as though I am dismissing mental illness as something less serious, but I assure you this is certainly not the case. In fact those with a mental health problem whom do have these naturally ‘bad days’ will in fact need a little extra support or care because the bad days will be exaggerated and even crippling. And even a reminder that they are not the only ones, because the fact is their judgement and clarity on the situation will indeed be clouded by the very invisible entity that gives them the diagnosis of being unwell. Those with a mental illness will already be isolated by the invisible mind monster living in their head, twisting their world so they feel alone. So the best, and perhaps the only thing we can do is to reach out, reach out to those around us and remind them that we care. Everybody deserves that.