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Coping Together: Carers and Eating Disorders

01/09/2014 at 19:45 (Anorexia, Personal, Reviews) (Anorexia, Blogging, Eating disorders, Field research, Kick-Back, Love (something like it) death, mental health, nostalgia, One for Sorrow, perspective, psychological, relationships, Review, Twitter)

I remember the look on my mothers’ face, as the doctor uttered the words that would change our lives forever. Frozen, all colours and none, it was a diamond-expression, with every conceivable emotion flitting from one facet to another. It was autumn 2001, with a darkening sky and bitter winds, and I shivered in a thin top. There was a method behind this – a little tip I had picked up from reading a celebrity magazine. My mother, of course, had no idea, and I wasn’t about to tell her of all the neat little tricks I had developed over the summer of chaos, when my life spun down as the golden leaves outside, crackling now with a riming of ice.

After leaving compulsory education and starting at a new college (with the fear of loss nesting in my chest, watching others pull ahead in classes where I had once set the pace), getting involved in my first “serious” relationship and discovering that the abuse from the year before had dulled my appetite for sex – not that I was about to admit any of this – I had flung out my hands for some kind of equilibrium. An anchor. Anorexia had quietly slipped in and wrapped chill little fingers around mine; told me things, about how dieting for my school prom and upping my fitness regime, would make me a better person. Not just feel better, but be better. I could finally get some order into my life; concentrate, hard, on such things, while the rest of the world went on smoking and drinking and eating and losing itself in flab.

Such an innocent arrogance, a thin-ice superiority. I am above and beyond you – look how I disappear.

Listening to my mother’s voice crack, as she asked the doctor how long my treatment would be, I hunched over my chair with white knuckles. I was cold under the skin, in a way that no fire or radiator could warm; there were red welts to prove it. A slimy fish-oil guilt went sliding through my mind. I remember that vividly, fourteen years on. My Ma had not worked while caring for her family, me with two siblings; now we were growing up, and she had taken what opportunities came her way – especially after the divorce, when she learned her own mind. She had become the co-partner of a private firm, and was progressing at a rate which – looking back, with the heavy heart of retrospect – I wish I had been well enough, old enough, aware enough, to fully appreciate. There are a lot of things I have allowed to slip by without notice, being strung out on anorexia and its symptoms. The very last thing I wanted to do was deprive Ma of any business prospects, any chances of promotion. Most of all, that keen look on her face, whenever she talked about work. She looked great, too. A handful of boys in school often remarked upon it. They were only friends, only teasing – and still. And still.

But in that surgery, she was my Ma, full of the cold-fire defiance and steely tone (masking her fear) which I remember so well. I often wonder if I got the dagger-chin from her, lifted to face whatever challenge presents itself. My ex will know what I mean.
I was curled over like the leaf husks, aching with hunger right into my bones, with a low-grade sneer that told everyone quite plainly that I had no idea of the very real threat to my life. It didn’t matter when the doctor told me that this particular mental disorder, anorexia nervosa, held the dubious claim of the highest mortality rate among depressive illnesses. All I could focus upon was the white static in my head, telling me that they were going to make me fat. Even more unloveable, unnoticeable; while paradoxically, the shivering fear inside wanted just this, and more. It was, and always has been, the push-pull of wanting to be recognized and appreciated, while craving the fate of the blue ice outside, ready to vanish when you breathe upon it. Fade out of sight, out of mind, the control of others.

The part of me that was still Me, fretted over becoming a burden to my mother. The build-up plan that the GP was trotting out – the medication for depression, which he was ready to prescribe – was not going to be cheap. Ma supported us both financially, since I was no longer well enough to work my part-time job, and college was already dwindling into the lamplight haven. The Thing crouching in my head, didn’t allow for intrusions.

It also didn’t want me to have a carer. This would mean constant surveillance, the thwarting of starvation and purging symptoms (frenetic exercise, and shivering in thin clothes, being only the start of the coil.) The bigger picture – which I could not see, dialled down on these absorbing details – would be weight gain, of course, but with the parallel therapy treatment which would examine whatever thoughts and emotions resurfaced. For any of this to happen, I would need to be placed under my mother’s care, since she was the only person available at the time (though I would go on to wreak havoc in my Nanna’s comfortable routines, to give Ma a break for a bit – even the most beloved relatives are not spared, and anorexia has fingers that like to pinch and needle. I still grieve over that time, though our bond is now stronger for it.) All the carefully-learned, unwillingly-met responsibilities of early independence – choosing food, and its preparation, running under the lamplight each evening – would be taken away, allowing Ma to protect me from the panic attacks and obsessive-compulsive rituals which had begun to appear in earnest. We didn’t twig at the time how much this would be weight-relative. Had I known what the following two years would bring –

No, it probably wouldn’t have made a difference.

It’s only now, over a decade later, that I can look back on the reality of that situation. We were muddling through. The fear and tension were palpable in the house, with only the two of us living there, and so often going around in circles of constant-questions-asked (“how many calories in this? can I rest now? No, I’ve not done enough, I’ve eaten too much.”) Ma kept on working to support us, often pulling such wearying shifts; while struggling to understand how the child she had raised and nurtured from a baby, was now slowly killing herself. She told me some years on – when we were able to look back on those blue-black days with rueful smiles – that at my worst, she would wake each morning and expect me to be dead, either by my own hand, or the physical side-effects of anorexia.

Imagine living with that, day in and day out.

By 2003, the  illness had become too contentious. Our mother-daughter relationship was frayed to its edge, despite the help of other family members. I trusted only Ma, and my Nanna, to look after me “properly”, and then only in the (decreasing) lucid moments. Her own life had become a coil of watching for my self-destructive behavioural patterns. She had lost weight, and I noticed, with a venom that makes me cringe to remember. All of the normal hunger cues were long dead, replaced by a continuous gnawing starvation, which sparked into panic around meal-times (yet more questions, frantic pacing, surreptitious trips to the bathroom to throw away food. She knew it. She was just too tired to stop me.) My skin was full of holes, with patches in my hair. We tip-toed around each other in the house; I hated having visitors, because they disrupted my routines of exercise (I rarely went outside by then.) The world seemed a lost cause.

An inverted kaleidoscope.

The worry and strain of living in that state of constant alert, left Ma exhausted. She had little time, or patience, for others. Anorexia had driven us into a spiral of negativity. Her love for me – at her own admittance – was sometimes overshadowed by hatred for the Thing in my head. As Granddad once put it, “Hate the act, not the person.”
It was becoming increasingly difficult to do this; to discern the real Me from the illness. That was when we knew it couldn’t go on, that outside intervention had to step in. The guilt tore Ma apart at the time, but I know she did the bravest thing imaginable. She walked away, letting the professionals take over.

Of course I wanted to make her happy – I hated seeing her upset, but the guilt associated with this – the denial of hope that I could recover – drove me further down into symptoms. “I can’t please anyone.” Deadening all emotions, I became convinced that my mother would be better off without me.
In light of this, my local psychiatric team broke the cycle at the prevalent moment, before the thread was cut. I would receive care in a neutral environment, away from outside influences, where staff were trained to cope with anorexia and is barbed comments, to look out for its sneaky ways. This would give my mother a break, while effecting some actual change to my physical and mental well-being.

Recovery from an eating disorder does not begin or end overnight. It is a day-by-day, year-on-year battle for many, with each case a process of rediscovering the true self, in conjunction with therapy to root out the cause = effect of underlying factors. These will be reflective of the circumstances and personal history unique to each individual; though in terms of how symptoms are presented, the song remains the same.

It’s always worth considering the involvement of carer(s) in the recovery process. To my knowledge and belief, no one with an eating disorder can effectively contain and manage its symptoms alone, healing without help – the love of a partner, the spur of a close friend, the attention of a teacher or guidance counsellor. There are in/out patient units available across the country, with staff who are able to deal with mental illness in a professional capacity. For a carer, it is a matter of choice, of emotions, of instinctive protection. It is learning the basics from scratch.

I would certainly not be where I am today – able to function independently, work full-time, socialize, write articles like this one – without the support of family and friends, who continued to pop in to see me whenever possible (even if I didn’t want to see them), lending my mother a helping hand, reminding me of who I was in school. It’s been a long process, and at times, I think some were scared off by what they saw – afraid that they would do more damage, perhaps. Others continued to see the person locked beneath the ice; there was the boy from school, the one I loved and never found as my own, who would text silly stuff to make me laugh while in hospital. He also invited me out to house parties, and knew when to keep quiet if I just felt – for once – like talking.

It is of the utmost importance to remember the child, the partner, the individual, with character traits and preferences wholly separate from the eating disorder.

Significant improvements have been made to the level of support available for carers – giving strength to the ones who must be strong – since my time in hospital, with the internet playing an important and interactive role in disseminating advice, both personal and professional. Nothing gets down to the heart of a matter like a shared experience; family members, those closely associated with someone suffering from an eating disorder, can feel less alone when speaking out on carefully moderated forums that are (rightly) kept separate from those available for sufferers. Here, discussions on topical issues can take place, with the guidance of mods, in a safe environment built upon mutual trust. As a matter of principle, I have never asked my mother for her personal thoughts / emotional reactions concerning those days when she looked after me; all the information I do know, was volunteered some years later, when our relationship was on more steady ground, and I was in a secure enough state of mind to deal with the sometimes painful truth.

Organizations such as the UK-based charity Beat, host message board forums and online tutorial workshops, with the aim of raising awareness of signs and symptoms to watch out for, while providing crucial advice on how to maintain as relatively normal a life as possible around the eating disorder. I say “crucial”, because – above all else – life must go on. With convoluted routines linked to the practise of disordered eating (starvation, binging) and any subsequent purging (exercise, vomiting, etc.), a sufferer may isolate themselves in such a way that is detrimental to their relationships. It is important to recognize this for what it is, and to reassure the sufferer that they are a firm part of a unit, and not alone in recovery.

“The person with an eating disorder is likely to experience periods of depression, anger, hopelessness and despair. Home may feel like a battleground with parents or partners feeling that they have become the enemy. It is important to remember it is the disorder that is taking over, and not the person who is changing.”

To this day, I am still somewhat at odds with the solitude I keep. In analysing preferences and tendencies, a fear-lockdown often occurs, should I question too much of what I do. I am left wondering how much of this is now a lifestyle, something so deeply ingrained as to be accepted for a faux-part of my nature. Would I have been a more sociable person, without the ED? Is it even worth asking this question? For the most part, the routines are linked to exercise – I am easier with eating now, having let go of a great many habits and compulsive routines while in my last relationship, though more out of necessity than any real desire to do so. Yet it was the impetus needed. They are not missed, and have not crept back in now that I live alone.

I was four years out of hospital when I met my former partner, Jimmi. Having edged back onto the dating scene through websites and social networking (these held a “distancing” effect, both reassuring and useful, in terms of maintaining “safe parallel realities” until I was able to cope with actual contact), I perceived myself to be close enough to an evolved form of myself, to try giving affection to another. The truth was felt in a low gradient of ego, a mind still woven about with thorns; I struggled to remember who I had been prior to the illness. What had I liked to do? Who did I respect, look up to, aspire to be? When I should have been trawling art galleries, going to the cinema, messing about with friends, I had instead been shuttled to and fro between psychiatric wards. Some quite formative years, as well as certain historical and cultural world events, will always be as black holes in my memory.

In 2008, using the internet for tentative steps out into the world beyond my room, it became habit to latch onto people so as to gain access to their thoughts and opinions, their preferences and dislikes. I had nothing of my own character to bring to the table, or so it felt at the time – I blagged it a good deal. This is probably true of us all, to some extent. Again, I must pull myself up – am I being too negative on myself? But I do feel like a social amoeba, sometimes.

Jimmi became something of an educative and influential force in my life. I absorbed his recommendations for literature, music, films and art, while giving back what I could – though it never felt like enough, and I lived in fear that he would look for someone more interesting, with a greater awareness of the world and its people. The latter, I still didn’t trust to any great extent, but he was a keen people-watcher, drawing inspiration from the idyllic pub gardens we sat in, the random encounters we often had while out and about. He would pull some contextual snippet out of the air, relevant to the situation, stirring up an old flicker inside me – that competitive streak, long buried inside a pillar of anorexia’s ice. I wanted my mind to work as swiftly, to be able to link one thought or concept to another in such a way that would make him laugh.

I went looking for literature that he had not read, watched films he had not seen – all of them parallel to his preferences. With each weekend visit, our discussions were fleshed out into debates, as I began setting out my own analyses, voicing opinions. I’m not sure how much he was aware of my hesitancy, the constant gnawing fear of upsetting him, or making a prat of myself. Again, this is probably true of any fledgling relationship, but it gave me more than a few sleepless nights at first … until I became comfortable enough to believe that he wanted me for Me. This would take a while, with stormy scenes between – misinterpretations, passive-aggressive warfare. His patience was balanced on a knife edge, with my inability to voice worries. Instead, he interpreted negativity through watching my body language (and is probably grinning in remembrance, if he’s reading this now) and my eating/exercise habits. No sooner had any upset filtered its way down, then meals would become a battleground and walks a forced march. My weight was a fairly safe barometer for moods.

Over time – and out of necessity, for the survival of our relationship – I learned to speak out with my voice, as opposed to symptoms. His company outweighed the need to keep silent.

I gained access to J’s mind, itself a rather private place. His interests became my interests, and it wasn’t long before I found myself thinking less and less about food. Hunger cues returned, with weight increases that saw the static-white in my head reduced to a background burr. This is not to say that the low-level moods and symptoms disappeared overnight – at times, they would rear up like wild beasts, particularly in response to a sudden change of plan or a moment of spontaneity, where my instinctive reaction was (and sometimes still is) to feel under pressure, as though control has been taken away. The illness saw J as a rival for my attention, and that nasty-bitch side of myself gave him some hard times. Our weekends together were always caught up in long-distance hikes, as compensation for what I saw as the laziness-crime of having slept in that morning, or stretching out to read in his back garden.

To put this into context – I was still underweight, with a disordered mindset, and no actual therapy in place. Having chosen to cut all ties with my mental health team, to go it alone in recovery, I was pinballing from one distraction to another, while maintaining a weight that felt “safe.” Our long walks required stamina – I needed to eat more, to reduce the gym exercise, so I could keep up with his strides. In winter, when poor circulation caused my blue fingertips to turn purple, then white, he would hold my hands and breathe on them to make the pain go away, while encouraging me to put on a bit more weight, so we wouldn’t have to keep making the stops.

Though we are no longer together, Jimmi is still one of my best friends, and continues to be an inspiration – which means he kicks my arse when he knows I’m dithering. Though I certainly had no intention of allowing him to become my “carer” from the outset, at times it was inevitable. There was only so much I could conceal. It is a mark of his patience – and the lasting effect of his company, on my mindset – that our relationship survived beyond the first few difficult months.
When I asked him to give his own perspective of those five years together, he responded with the style that has always been reminiscent of a leather jacket, whisky and cigars.

In similar fashion, I asked a Twitter friend, Brent Allard, to tell me of his experiences with anorexia. As is so often the case, a random fact dropped into conversation had set off ripples. I had mentioned my (past and present) experiences with anorexia nervosa, whereupon he began to tell me of a former girlfriend who also suffered from its effects. Setting out a rough guideline of questions based around personal memories of behavioural patterns, and research into the study of eating disorders, I sought to frame Brent’s unique insight in such a way that would give a broader perspective of anorexia, and its effect upon relationships.

While my mother loves me by default (if I can go on assumptions here), her caring for me in those dark days might be considered a prerequisite of our familial bond.
Where my former partner, and Brent Allard are concerned, the responsibility originated from a different point of care. I’d like to give them a voice, on this blog.

To assume that love alone has the power to cure anorexia et al, would be a gross underestimation of the influence a mental disorder can have on a person’s life. First and foremost, they must want to be well themselves – this requires finding an internal equilibrium that I cannot even begin to describe here, as much as this sounds like a cop-out. I still do not know how I survived, where others didn’t. Hitting rock-bottom in 2003, it seemed that there would be no escape, until the duty of care was taken from my mother’s hands – she had done all that she could. The physical dangers of an eating disorder are very real, while the underlying dark waters of depression can bring on a relapse, into symptoms perhaps abandoned years before, thought forgotten. It is then that the network of support found in friends, family, colleagues, lovers, teachers – the relationships that make up a life – are as necessary for recovery as psychiatric treatment. No one should feel that they are fighting alone.

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