Sometimes Forever Is Just A Second: anorexia

World Mental Health Day, 2018: "Late"

2018

07:25
1 Comments

Waiting.

I like to think I’m a patient person. And I really hate the idea of being a difficult patient. But, in all of that, let’s just remember that I am a person. I was a person before I was a patient, and one day, I hope to be just a person once more.

I have been very patient. I’ve waited. I’ve given it time. I’ve waited some more. I’ve been a name in a system. And I’ve been a name trying to get into a system. I’ve been a date of birth in a spread-sheet. I’ve been a list of behaviours and a mobile number. I’ve been a weight. A weight waiting. I’ve waited.

Eating Disorders Awareness Week (26 February-4 March 2018) is asking the question: “Why wait?” This is two fold. Evidence suggests that, “on average, 149 weeks pass before those experiencing eating disorder symptoms seek help. That’s almost three years, 37 months or 1,043 days” (BEAT). This makes the gap between symptoms and recognition, without doubt, one of the largest, and suggests a need to increase symptom-awareness. Furthermore, BEAT states that “[e]ating disorder sufferers face an average wait of three and a half years for specialist treatment”. Again, would this happen with other life-threatening illnesses? More than three years, in the grips of a life-limiting, life-claiming illness is a dangerously long time. I’ve said it before, and I’ll say it again: it’s as though professionals/the health system/powers-that-be are playing my life like a game. That might sound somewhat ironic from someone controlled by anorexia, and treading various precarious lines, but that is exactly why I need help. This is exactly why this wait is wrong. People's lives are in question.

The first “professional” I ever saw was a school counsellor. She repeatedly told me how I was “really very lucky, because at least I didn’t have anorexia”. Admittedly, at the time, I was yet to be diagnosed with said illness, and was seeing her for other reasons. However, I was eating disordered, which she didn't know, because she's never actually asked me anything about my eating habits. Honestly, I’m not entirely sure how she made such an interesting observation regarding how lucky I was. (There’s no luck to it.) Not only was this a missed opportunity, it also dismissed all other issues I was experiencing and fed me the belief that nothing was wrong with me. Of course, I’m not blaming this woman, she was a very small piece of a very big and complicated puzzle. I’m simply highlighting the early days of a very long wait, and a discourse that contributed to me continually doubting my symptoms.

In the six years since that first appointment I have seen many different professionals. I’ve also stood and watched helplessly as many friends have been subject to a similar post-code lottery waiting game. I have waited and consequently, I have, quite literally, lost years of my life. I’m still waiting. I currently sit, attached to my phone, as I wait for my fate to be decided and fed-back to me (no pun intended) once more.

Having accessed specialist eating disorder services for a period of time, I know they make a massive difference. This is where lives are saved. This is where the healing starts. This is where the living reemerges. Whilst under their care, I finally began to make progress, both physically and mentally, however, this too was cut short, namely due to “complexity” and my move back to university. I slipped through the net once more. Eating disorders need specialist care. With specialist care progress IS possible.

Repeatedly, much to the disapproval of my “must please everyone and be the perfect person” tendencies, community mental health teams are unsure quite what to do with me. I’m functioning (debatable, but let’s just say I am because I’m doing a degree…a second degree…), well-dressed, well-spoken, smiley, polite, cooperative… I am not your standard “sick” person. And whilst you’d hope that mental health services would appreciate this, and see through it, often, generic mental health teams are flummoxed by my all-consuming issues, which lie so carefully hidden in essays, brushed hair and coherence. Anorexia fools them all too well, and I’m left small and side-lined once more.

Perhaps my favourite thing that a professional has ever said to me (just topping “you smile too much,” and “you need to take off your shoes and walk in the grass”) came about two years ago, as I approached the end of my undergraduate degree: “Yasmin, I think the best thing you can do is to do some research into where in the country has the best eating disorder treatment, and then move there.”

*smiles politely and thanks for his excellent advice*

I’m not sure he quite realised how all-consumed I was. I’m not sure he realised how I was on my knees and begging for help. I’m not sure he realised how much more time I would lose in the months I still had under his care, in his catchment area. It’s been said many times, but this simply would not happen in other areas of the health service. Fact. A patient – because yes, I am, still, unwell, a person – because this is my whole life here, with a broken bone, a long-standing health condition, an illness that threatens to take their life, would not be told to a) play detective and seek out the illusive service that might just be able to help them, and b) would not be expected to, quite literally, uproot their already shaky life, move hundreds of miles from friends and family (who are fundamental to recovery and LIFE – I owe you all the whole world for keeping me smiling when pain and suffering feels endless) and rebuild their existence?! It just wouldn’t happen. It doesn’t happen.

At some of my “most unwell” times, when I have been most desperate, it has been largely due to utter hopelessness. I have spent years of my life waiting. Does waiting ever stop? Or is waiting just my existence now? 2018 hasn’t exactly gotten off to the start I had hoped; I’ve spent 8 solid weeks waiting, and been really quite unwell. Before that, on moving back to university in September 2017, and despite my home team sending letters and communicating with local services in June 2017, I waited until the end of February 2018 for an appointment with the local eating disorders team. The time between September and February? Well, I’ve been functioning…academically. I’ve also been chasing referrals and chasing my marbles….I wish I could do this on my own. More than anything, I wish I could recover without anyone’s help. I’m stubborn and determined and perfectionistic and eager to please, but I am risking the wait and admitting that I need help. I don’t think people have any idea how hard that is…how terrifying it is to quite literally put your life on the line, time and time again…and be put on hold. I’m sorry, but this is my life. My whole entire existence. I can’t put it on hold and just put anorexia to one side and go about my life. That. Is. The. Whole. Bloody. Point.

This is my life. And I got ill. And it really sucks. And I’ve lost so much time. And I’m still losing. (No before/after/hospital picture will demonstrate anywhere near the reality of living with anorexia. No weight loss will ever capture the reality of how much time…how much LIFE and LIVING…I have lost.) I’m still waiting. And I have no choice but to wait, because this is my life.

With specialist care, when I was in a better place, when I had the energy to fight, the motivation to imagine a life without anorexia, and the hope to believe it were possible, recovery was not impossible. It was tough, and it was a process, a work in progress, but it was not impossible. Now, I’m waiting. Again. Patiently. Because I’m a patient. But I’m also a person. And I’m still, still waiting.

05:07
1 Comments

Time to Change 2018: A Letter to our Secretary of Health, Jeremy Hunt

anorexia

Dear Mr Hunt,

I’m one of thousands, probably hundreds of thousands, caught in a failing system, failed by the system. I am not an anomaly. I am not a rarity. And that’s what saddens me most: I am one of thousands dependent on a system that is costing me my life.

I’m 22, I graduated from a Russell Group University with a degree in English Literature. I’m doing an MA. I’m smiley, polite, and well-dressed. On the surface of things, I’m functioning and doing okay…I’m a productive member of society and you’d probably tell me the world is my oyster. I’m also suffering from anorexia, depression, and anxiety. I’m struggling, and I’m slipping through the system, time and time again.

The truth is I don’t know at what point I became trapped, not in my own head, but in the desperate – and trust me, I am desperate – search for something that may help me. But, you see, on the surface of things, I’m not sick enough. I’m not thin enough, or bedridden ...I’m “functioning”, and thus I’m one of thousands who, as far as the mental health system is concerned, is easily dismissed as part of a convenient, penny saving initiative.

It would be ingenious, if so many lives weren’t the price being paid. You’re failing those who need the most support, and you’re capitalizing on it: our weakness, physically, mentally, geographically, economically, as pawns in your chess game, is entirely your gain. And of course, not only is the system failing those who are really, and it’s taken me a while to admit this, actually quite unwell, not only is it manipulating that situation to its sole-advantage, those at its mercy are totally powerless to the powers that be.

As a child I remember being taught that education is the solution to everything, and the sky is the limit. Stay in education, they say. Stay in education (we need doctors and nurses and lawyers and people who can save us from a failing economy and teachers who can teach us to follow the rules, and scientists because we so desperately need a cure for cancer, and we need to work on our renewable energy, and reducing our carbon footprint and we need to replenish our workforce with a whole generation indoctrinated by the necessity of labour). We’re taught to function and education is the way we do it. We’re taught that there is not time to be unwell, and gosh, God forbid we demand “more”. We’re fueling the economy on personal denial. Yet, I wear society’s prescribed disguise of a functioning, well-educated, versatile human being so, so well…so well that it is killing me.

I could be anything. Yet, my health is the hurdle I cannot jump alone – I never learnt to high jump and I never learnt to land. That doesn’t mean I won’t jump and that doesn’t mean I’m not prepared to bounce back from the landing. It means that I need a safety mat, a mat my illness will not allow me to provide for myself. On a recent trip to A&E, as I cried into a shallow bowl of vegetable soup, a nurse said something that interrupted my apologies: “you’re the only one on this ward who will leave here and be no better, and I so wish there was something we could do. It’s so wrong”. The NHS, and those that work for it, are glimmers of light in a selfish world – we cannot diminish their efforts, or risk losing their potential. They are true stars. Blame cannot, does not, and should not lie with those at the forefront. But, the point stands: this isn’t like a broken leg where everyone rallies round, and you have crutches to make life just a bit easier, and pain relief to make life just a little bit more doable. This isn’t like a broken leg, where friends and family gather to sign the cast, because nothing is more important than “functioning” and there isn’t time to be unwell, and mental illness is messy and stigmatized and silenced and, well, “you’re too bright to be doing something so silly as starving yourself to death”. This isn’t like a broken leg, I wheeled my drip stand around on my own, in silence, shame, hopelessness, and numbness. This isn’t like a broken leg where every single cell of your body is working with you to recover; mental illness doesn’t work that way. Anorexia, especially, doesn’t work like that. Anorexia wants to claim my life and it will do whatever it can to ensure that it achieves its goal, like I did whatever it would take to achieve academically – see, even my illness fits perfectly into the notion of “functioning” and a productive work force. Anorexia will not let me pull in my own safety mat and my god, anorexia cut the safety harness years ago.

I need a health system that will catch me, because I’ve fallen through too many cracks. I need a health system that will not discriminate me, or negate my struggles, simply because I function. I function because I’ve never had the option not to. I function because I perfectly epitomise the notion of “head down and carry on”. My “functioning” is keeping me ill; my “functioning” is anorexia’s disguise. My “functioning” is my illness. I need a health system that will hear me. I need a health system that will truly listen. I need a health system that will let me be anything, a health system that will give me the opportunity to really try living.

The sad truth is, I no longer believe in my own recovery. I do not believe I am savable – by others, or, more importantly, capable of saving myself. I’m not asking for a miracle – really, I’m not. And I’m not asking for anything for myself, I’m saying this not for my own recovery. I’m saying this because I know that many more people, like me, will continue to fall through the cracks. They’ll continue to fall because they “function”, because from an early age, all they ever knew was to “function” and their functioning will kill them. I’m saying this because I know, and I’m saying this because I don’t think there is all that much wriggle room for cuts in the mental health system. You can’t cut a system that is, pardon the pun, on its knees, skin and bones – there’s nothing left to lose. Too many lives have been lost, too much potential has been lost. I could have been anything, but right now I’m struggling to even keep myself alive.

I strongly believe that early-intervention, early specialist intervention is the key here. Teach people how to save themselves before they become so lost, disillusioned and controlled by illness that they no longer have the energy to fight. Teach children that mental illness is valid and stop brainwashing the next generation into thinking that “functioning = success”. Don’t wait for someone to get sicker before treating them – this wastes your time as much as it does ours. Don’t use old-fashioned, patriarchal, tick box means of diagnosis. We are NOT statistics. We are real life people, with real life needs in a real life world. We are not pawns in a game of chess. Our lives are not a game. Do not use our sickness to make us putty in your hands. We’re vulnerable and you know it. Don’t use my illness to manipulate me. I don’t need your help in my self-destruction - I need help in stopping it.

Please, please, don’t snatch a life-raft from those who are most vulnerable. We know how to swim – we can be anything – but the health system is watching us drown, the health system IS drowning us. It’s a slow and painful death. I’m flailing my arms around and the lifeguard can see me…trouble is, and I’ve seen in excess of 60 professionals, there’s nothing more dangerous than when you’re begging for help and the lifeguards turn their back once more. Listen. Hear us. I could have been anything, but the mental health system has failed me.

I’m one of thousands, hundreds of thousands…I’m not an anomaly.

Yours faithfully (because despite it all, I’m a very complying member of society),

One of many who’s slipping through the net, time and time again.

Someone whose “surface functioning” is a neatly disguised illness.

Someone who really, truly, desperately wants to be better.

Someone whose time it is to talk.

Someone whose time it is to be heard.

12:47
0 Comments

Does Noxon’s To the Bone have a backbone after all?

anorexia

I wasn’t looking for a “good movie” about eating disorders. I think the notion is somewhat paradoxical, idyllic and, frankly, unattainable. With To the Bone recently released on Netflix, and having watched it, it’s not that I think Marti Noxon did a “bad job” per say. It’s just that I’m not sure “good movie” and “realistic depiction of an eating disorder” are complicit. I don’t think they can coexist in the way we hope/ “need”/want them too. And I think, maybe, that’s a good thing.

My eating disorder does not work with life. My eating disorder would make an awful film. It is simply not malleable or functional in the way that films so often portray mental illness, and the concept of making a “good movie” about anorexia is just not practical. And that is not a challenge.

For what it’s worth, I totally admire Lily Collins (who plays the lead role of Ellen in To the Bone, and also wrote about her struggles in her book, Unfiltered), her bravery in breaking her own silence is inspiring, courageous and heart-felt – I very much hope she is her own inspiration. I also know the risk she took in the hope of raising awareness, but more fundamentally, encouraging, indeed opening, conversation. She returned to unchartered waters, waters she spent so long, and so much of her younger years, drowning in. (Collins "physically" embodied the anorexic character and lost a rather significant amount of weight for the role.) It’s a risky business, and testament to how powerful a good support system, armed with floats and life jackets, ropes and warmth, is to recovery. It is, however, and this is where my criticism begins, an unnecessary risk and one that only feeds the “underweight” stereotype – forcing a mental health disorder onto the body.

Firstly, I think it's important to say that any "mental health film" is only ever going to be relative; To the Bone's "success" - or otherwise - can only ever be "relatively good" at best. Relative, that is, to the time constraints: an hour and a half is only ever going to offer a snapshot and is more often than not going to adopt a “sick à better” narrative, by its very nature. Oh how I wish the reality was as simple!

Admittedly, there are, I think, raw issues with certain shots of Ellen’s frail body – specifically her back: snapshot/snap-able. As the film went on this did indeed wear closer to the bone, did we really need that many shots of jutting shoulder blades? That said, Noxon does go someway in suggesting some of the lesser talked about side effects of such a cruel illness: Ellen’s bruised spine offers a perhaps unwanted glimpse into the pain that lies beneath the surface and the length of suffering one will inflict at the hands of such an unforgiving, demonic dictator. This, like the painful family therapy appointments, holds a mirror to the parts of anorexia that cannot be measured in numbers on a scale.

Moreover, Ellen is neither the entirely whimsical fairy figure, nor the totally consumed “anorexic” character, with no hopes/ambitions beyond her own shrinking, that these films usually depict. Whilst the name change is a questionable therapy technique (Ellen's therapist suggests she rename herself), and one I think is a bit unrealistic/simplistic, on a deeper level, Noxon does shine a light on the way in which both our pasts and our diagnoses/illnesses shape our identities. Ellen’s name change does not cure her, but what Noxon does do is imply a freeing/re-indentifying, that, whilst undeniably simplistic, does go someway in deconstructing the stereotypical “anorexic” identity. Ellen is malleable because she is human. She is not her diagnosis – she was human before it and she is human within it, and maybe, one day she will be someone without it.

Noxon interweaves humour in a way that at first may seem somewhat dismissive, or reductive to the severity of the situation she deals both with and within. Again, I think such a claim is somewhat two-dimensional. Many a time, humour has been my sole coping strategy. I cried a lot in hospital, but I also laughed a lot too, because sometimes, that really is all you can do. Ellen is blunt and witty, her one-liners are so close to the mark – or the bone – that they have you inhale sharply before laughing a laugh you’re probably not totally sure is “permitted”. There were a lot of rules on the ward, but a ban on laughter was never one of them. We laughed about the painfully sorry state we’d landed ourselves in because, well, because sometimes, words alone fall short. We laughed because the menu for the next day was so horrendous that if we didn’t laugh we’d probably cry. One dreary January afternoon, in my first few days, we laughed our way through Obama Lama and Scrabble, because, well, onwards and upwards. When I choked on the first bite of anything other than cereal/veg I’d eaten in years, and sobbed/coughed my way through that first mouthful, swearing down that the fish finger was out to get me and food was, as feared, “dangerous” (I’m still not sure to what extent I was joking, or deadly serious), all my family could do was laugh, because no words would have comforted the fish finger debacle…and I bet you won’t find advice on that!

There were, of course, darker moments too, moments where humour wouldn’t have fixed, or stemmed the overflowing problem. Yeah, those moments weren’t all that pretty – and sadly, there was no romance, or beer, to dull those ones, but again, I guess that’s the stark reality that wouldn’t exactly “sell”. And maybe that’s okay? Yes, maybe it would raise awareness, but maybe it would also just come across as being “too irrational/ludicrous” to comprehend and engage with? There is nothing rational about an eating disorder and whilst Noxon depicts this, at least partly through the voids only laughter can fill, there would come a point where the film, and its representations, would just dissolve and instead of offering insight, the stage would be set and a serious mental illness framed as a puny game/laughing stock/"freak show". To be totally honest, those are the moments I wouldn’t wish on anyone – not even as a bystander. No one wants that kind of viewing, whether in real life or on screen. These are the moments I hope you never understand.

Whilst, sadly, I’d argue the progress Noxon makes in avoiding making Ellen’s body the sole focus is disturbed significantly by those back-shots, that is not to say that Noxon does not encourage alternatives to the “diet gone wrong” assumption many give to eating disorders - oh how I wish this was as simple as a "vanity issue"... What Noxon does do is present a deeply unhappy character, the roots of which are never entirely determined – as with anything in life – who self-punishes and self-destructs as a means of dealing with a fundamentally weakened self-worth. A large percentage of the film focuses on the role both Ellen and Ellen’s anorexia has on her family…and also the role the family has on both Ellen and Ellen’s anorexia. As a sister myself, one of the scenes that really stuck was Ellen’s sister’s protest that she missed out on having a sister. I can only assume that living with someone deep in the grasps of anorexia is like living with a shell of a person. On the day of my brother’s Year 11 prom, I had my first of many 4 hour round trips to the hospital and down the corridor to the ED unit, pausing briefly to beep those scales. It was one of the worst appointments of my life and it was one that will stay with me forever. I’d been waiting for the appointment to come through for ages and was on the brink of being admitted, it was touch and go whether I’d be back in time to see my brother go off to prom and I was so so angry that I had to choose hospital over my little brother. As it was, I got back just in time and hid tearful, puffy eyes behind big sunglasses.

I really struggle with the idea that anorexia is glamorous. Trust me, there was nothing glamorous about those sunglasses, there’s nothing glamorous in counting counting counting, there’s nothing glamorous about being so detached from life that nothing else even gets a look in. Noxon attempts to remind viewers of this, with the bag of vomit under the bed as one of the most stand-out examples. However, again, this is compromised by the romantic, and romanticised, relationship that emerges between Ellen and Luke. Idyllic in all senses, Noxon's only saving grace is that Luke is not entirely depicted as Ellen’s “knight in shining armour”; at least by the, rather neat, ending, Ellen is beginning to fight for herself. That's the crux: you can be admitted to many hospitals and see many professionals, you can fall in love, fall out of love, study, or put your life on hold, but ultimately, the only person who can save you is you. To suggest otherwise is simply ignorant and, frankly, a waste of time.

I think it’s probably worth noting that the approach of the clinic/house is very different to the majority of units/wards I know of in the UK. For one, food is the focus. Whereas, in To the Bone, believe it or not, this seems to take a backseat, allowing therapy and the therapeutic environment to take the front seat – an interesting concept. I’ll admit, as I watched that first meal time and saw the patients pick and choose their meals, part of me wondered how this was ever going to work. Unsupervised and deeply disordered, I dare say, the reality is it quite probably wouldn’t work. That said, the support and unspoken strength that was shared at the dining table is something that I’ll never forget – staff were the pillars of that support, but other patients who fought their battles at my side, whose eyes I caught across the battlefield, and whose hands I squeezed - battles won, and lost - really did keep me going. Whether Noxon’s model is fit for purpose or not, the friendship, hand-holding and moral support is more realistic than you can imagine.

To the Bone is far from perfect. But maybe we are wrong to be looking for perfect? I’ve barely even touched on the potential impact this film could have on impressionable/vulnerable viewers, largely because I think a lot of that stands of its own accord and because criticism has covered this area in abundance. My argument, therefore, perhaps neglectfully, places that to one side, not because it is not incredibly important in considering what Noxon has done, but because I think we need to rethink what it is we, individually, wanted/needed/expected To the Bone to be upon initial viewing? To the Bone could simply never be a “good film about anorexia,” because such a notion is as unrealistic as aspects of the film and as idyllic as its romance – because ultimately, whilst Noxon and Collins may have wanted to raise awareness and encourage conversation, their primary goal was to make a film and therefore, such conversation and storytelling had to be screen-worthy. With that in mind, I ask that you simply refrain from judging reality by a film. Noxon does make progress here, but there are, certainly, gaping holes in her representations and depictions of an incredibly complex and personal illness, largely, because, more than anything else, one size simply does not fit all.