The recognition of eating disorders as mental illnesses that need acute medical care, both physically and mentally, is thankfully on the rise. They develop for a number of very personal and very individual reasons, perhaps consciously or unconsciously; the point here being that as I believe of everything in this life, there can be no ‘one size fits all’ approach to treating them. Especially in the case of suffers with some form of multiple diagnosis or other health conditions; in my case, Type 1 Diabetes.
Over time and with often long awaited access to psychological services, sufferers can work with psychiatrists, psychologists, Occupational Therapists, counsellors; or a mixture of all of the above, on the best approach to help them overcome these diseases of the brain. However, when the physical symptoms of eating disorders begin to manifest in a way which endangers the lives of sufferers, hospitalisation as an inpatient on a specialised Eating Disorders ward, may become necessary as a means to remedy all of the horrors unleashed on the body by varying forms of malnutrition, starvation and purging. These horrors include Heart failure, kidney malfunction, and osteoporosis to name a few. Ultimately, and a fact I wish sufferers could see objectively, is that eating disorders are responsible for the highest rates of mortality of any mental illness; through a mixture of the aforementioned; but also suicide. As one loses the will to cope alone.
In all likelihood, many will have heard of Anorexia and Bulimia, perhaps using the word Anorexic in an almost derogatory sense to describe someone they believe to be too thin. I have the impression it is still widely believed that eating disorders are lifestyle choices, born out of a vanity which, as our media and popular culture seem to do, places on a pedestal the need to be slim, almost as a means to be a success. To be somebody. To be attractive. As such, we are led to believe that impressionable young females are bombarded by this notion, leading them to starve in order to copy their celebrity heroes. If only it were so simple. While the aim of weight loss may be triggered by this kind of thinking for some individuals, an eating disorder very quickly takes on a life of its own, fast becoming the only reason for one’s existence. Though in fact, Anorexia and Bulimia aren’t even the most common of eating disorders. No – the most common are known as EDNOS or Eating Disorders Otherwise Not Specified – A title which demonstrates the complexity of these mental illnesses and includes Binge Eating Disorder and Orthorexia. Even for somebody supposedly Anorexic, there exists a vast diagnostic spectrum across which they, or any other sufferer of an eating disorder may exhibit behaviours or symptoms more commonly seen in the diagnosis of another. As an example, one may find themselves fitting the bill for a diagnosis of Anorexia Nervosa with binge purge tendencies. Or Bulimia Nervosa with restrictive tendencies and so on. Starvation, followed by purging any small or large amount of food consumed or binging in reaction to prolonged starvation and then once again restricting consumption, purging or using laxatives to dangerous excess.
For whatever individualised reason, these difficulties develop and I am no expert but one thing is for sure; that once these mental illnesses do build up a head of steam, they have the ability to morph and evolve continually, plunging sufferers even deeper into the mire of all round ill health, overshadowing all hobbies, work, interests and becoming the only daily point of reference and routine. I apologise to the reader for going into relatively lengthy detail though I am keen to take an opportunity to truly enlighten all as to what the world of eating disorders entails.
Personally, I have exhibited patterns of behaviour which make a clear diagnosis difficult but which I believe fit within Anorexia with binge/purge tendencies. An obsession and compulsion which began as the result of losing an unexplained amount of weight and quickly became my own reason for living. How little or healthily could I eat on a daily basis in order to maintain the new physique which allowed me to wear all the fitted and stylish clothing I’d always dreamed of? Outright vanity in my case I suppose. I wasn’t necessarily afraid of food, indeed I’d always eaten more than my fair share; though I slowly but surely began to prohibit certain types of it from my diet; nothing refined, no carbohydrates, oils, nuts, saturated fats. No frying. no chocolate, no cake, no potatoes, no bananas. Only grilling. Only boiling. And on like this it went. I am also Type 1 Diabetic; A condition centred entirely around food consumption and how to manage it. Quite a tightrope to walk in many respects.
There has been something of a noise made intermittently (as with most issues) in the news and media in the last few years, concerning an eating disorder now popularly known as ‘Diabulimia’. Different from others in that people who suffer from Type 1 diabetes alongside the troublesome thought processes of an eating disorder omit the insulin injections they require in order to lose weight.
Insulin, produced in the pancreas, is the hormone responsible for allowing all of our bodies’ cells access to the energy from the carbohydrates we eat and put simply, a Type 1 Diabetic’s Pancreas has stopped producing it. Carbohydrates come in many, many forms; from a grain of sugar and a slice of refined white bread to all grains, beans, pulses and every fruit and vegetable; all of which are broken down in the body into the same end product: glucose. This job has often been virtually done for us in most of the refined foods available on supermarket shelves where the raw ingredients have had the parts which slow down the absorption of their glucose removed. For example, fruits and vegetables contain carbohydrate in the same way their cartoned juices do. The difference is however, that the fibrous skins on these foods in their raw state, slows down the rate at which our bodies digest the glucose they contain, thus not causing spikes in our levels of blood sugar, requiring insulin to utilise it throughout our cells. In the absence of insulin, a Type 1 Diabetic must inject it in order to eat these foods and though there is nothing Diabetics can’t or shouldn’t eat, it might be wise to steer clear of more refined forms of carbohydrate to avoid high blood sugars – but the same goes for anyone looking to lead a healthy lifestyle.
By omitting insulin, a Type 1 Diabetic has the power to manipulate these processes; refusing their cells access to these carbohydrates, which build up in the blood, and forcing the kidneys to expel blood sugar through the urine. As a result, the only energy sources available to the body are its own fat and muscle tissues, which diminish rapidly in this process. Much like an eating disorder itself, many, many health complications arise from constantly high blood sugar levels including, blindness, nerve damage requiring limb amputation, heart failure and ultimately death. With the minute attention Diabetics must pay to virtually every meal and snack, it is not surprising that statistics show a large number of Type 1 Diabetics go on to develop eating disorders. I didn’t omit my own insulin in this way; I didn’t require much anyway as I wasn’t eating much and when I did I purge the majority.
It is not until one finds themselves ‘in the system’ as it were, as I did, that you can truly appreciate how ill equipped services are in many ways and how ill trained its carers and practitioners appear to be in many areas. Or simply that they care not for the true well-being of their patients, instead ensuring they do everything they deem within clinical guidelines, to cover their backs from any threat of legal action in the event of misfortune. While I accept that unfortunately this is the world we live in, to me it is simply wrong. There are of course a great number of fantastic physicians and therapists who do care for their patients, though I have only encountered them in the more relaxed environment of outpatient care. Once my admission into an eating disorders unit became necessary, I was thrust headfirst into a system of red tape and numbers. Again understandable when the main objective was the preservation of my life, but not so when confronted with the loss of my freedom in a way which I cannot and never will accept, no matter how desperately ill.
It was decided by my psychiatrist that I should be referred to a specialised eating disorders ward in North London; The Phoenix Unit in Tottenham. I’d reached my lowest weight and more importantly, my mineral balance was out of whack. As the result of constant purging, the levels of potassium in my blood had plummeted, carrying with it the risk of an instant heart attack. I went into the hospital with a completely open mind; deciding long before that I’d had enough of the ravages I was exposing my body and mind to, though immediately, I was sure the ward’s environment, and its program would be detrimental to my physical and psychological health in other ways. Especially psychologically, as my mind struggles deeply whenever I feel confined, restricted or restrained. Where my choices, my ability to come and go as I please and my freedom to answer to nobody are compromised. As a mental health ward, this was very much the kind of world I was entering, where I could be watched 24 hours, day after mind numbing day, through slats in my bedroom door. Unable to leave the ward without permission or even smoke outside without proving my health had improved. Indeed, I was required to remain in a form of solitary confinement for the first week of my stay; prohibited from leaving my bedroom in case of my health was put at risk. This made no sense to my imprisoned mind; I could walk I could talk and so like a gazelle, I was desperate to leap the fence within my first hour. It was this imprisonment, which I knew would make it difficult for me to focus on the reason I was there; to begin the process of recovery from my eating disorder(s). Retrospectively, I now know that I was only admitted for the purpose of physical intervention; there wasn’t really any prospect of psychological treatment, except for the daily therapy group led by staff or patients. In hindsight I’m thankful because it meant a shorter stay than many of my fellow patients; or more appropriately, inmates.
I wasn’t going to and didn’t take these new regulatory shackles lying down; immediately I made every noise possible as to my displeasure at the almost forced smoking cessation. As soon as I entered my bags were searched for ‘contraband’; things like drinks, sweets and chewing gum, all of which I had. Some of these items happened to be my own little luxuries; just things, as we all have, whichI enjoyed and until this moment dared to take for granted day to day. The sweets were there to help me in the event of a Diabetic hypoglycaemic attack; where the blood glucose level drops too low, manifesting in symptoms of weakness, shaking, sweating, confusion; or death of left untreated for long enough. Considering the lack, I had been eating, I had been experiencing these attacks frequently and used the sweets to treat them in my own way. As I have my whole life. A Type 1 Diabetic and especially one to whom freedom is everything, is the one who lives with and treats the condition every day of their lives. Managing it based around all of life’s day to say variables. Based on their own diets, activity levels and metabolisms. They are the doctors and although Diabetes care teams and specialists are met every few months for check ups and advice, they are truly the only people required to and able to treat themselves as they will have done so for many years.
As I have been told and subsequently discovered in the ward, GP’s and the majority of healthcare professionals seriously lack in their knowledge and training in how the condition should be treated. There aren’t any clinical guidelines, there is no regimen or blanket approach to treatment; it is a completely individual process. I encountered nothing short of incompetency, or at least a lack of trainingin the treatment of diabetes whilst on the ward; where clinical guidelines and red tape took the management out if my hands and placed it into those without a clue. After no thorough assessment, the ward GP prescribed my insulin requirements and from then on the worker bees (nurses) couldonly administer what he had written on my medicine chart; despite me knowing that I needed way more insulin and frequently raising this with anybody who’d listen. The treatment at the hospital required me to follow a program of structured and systematic eating; 3 meals and 3 snacks a day. This amount of food required more insulin than I was being administeredand this reflected in my blood sugar levels which would regularly sky rocket to dangerous levels. Guidelines also stated that nurses were required to physically administer my injections; something I wasn’t going to allow in any way shape or form. Something so personal. I administered them myself, though every time, I was watched sadomasicistically by nurses as I slid the needles into my flesh so they could ensure I was taking the correct amount. To say this angered me barely begins to cover it and it got to the point that if they wanted to watch, I’d sure as hell let them; dropping my pants in the corridor to jab myself in the backside, right where they couldn’t miss s thing.
After much protest, my cans of diet coke and insulin medication were wrangled from me. Being Diabetic, I’d always consumed diet fizzy drinks and enjoyed particular brands. I was however told that these would not be allowed and certainly not until I’d consulted with the dietician, whoever and wherever they were. It was against ward regulations to consume anything calorie free, even water it seemed to my amazement. This I understood, seeing as we were in the business of increasing the weights of patients but here you had a diabetic who, like many diabetics who follow an age old wisdom of dietaryguidelines, was not and never has been in the habit of drinking anything that isn’t sugar free; that includes tea, juices and squash; sugary versions of which were all on the menu. In theory, I could drink these; but only with the correct doses of insulin which Iadminister through a process called carb counting used for all meals and snacks containing carbs; a science I won’t bore you with on this occasion, though it can of course be ‘googled’.
As for my insulin medication, though I argued, it was taken from my possession and handed to people who’d really abuse it I.e. nurses and staff, in not administering my doses correctly. I’d like to note here that while I took my frustrations out on the nursing staff and their lack of knowledge, it was simply because they were the ones responsible for providing my medication, access to locked toilets and meals on a daily basis. I understood and understand that they were simply doing their jobs; required to follow the charts and guidelines formulated by physicians and professionals higher in the pecking order than themselves. Not to mention institutionalised methods of clinical practice. I often attacked them verbally, for their failure to treat me as an individual; a human being who knew what was best for him. To forget the charts and the working practices and just listen to me. But it normally ended in tears. My own. On the inside of course. To best sum up how I believe the system as a whole is in need of a serious revamp I will say that all of the doctors, all of the nurses, all staff, consultants; all of them, are more institutionalized than the patients.
Within my first few hours on the ward a blood test revealed the need for me to be whisked off to A&E. The levels of Potassium in my blood were critically low, due to my consistent purging, and I needed an intravenous infusion ASAP – A process with which I was already familiar having been in and out of hospital for it over the past few years. Potassium is a vital mineral. A catalyst for many important bodily functions including; hormone secretion and action, systemic blood pressure control, gastrointestinal motility, glucose and insulin metabolism, mineralocorticoid action, renal concentrating ability, fluid and electrolyte balance and muscle contraction. The most important muscle being the heart. The symptoms of Potassium deficiency (Hypokalaemia) include Weakness, tiredness, or cramping in arm or leg muscles, sometimes severe enough to cause inability to move arms or legs due to weakness (much like a paralysis), Tingling or numbness, Nausea or vomiting, Abdominal cramping, bloating, Constipation, Palpitations (feeling your heart beat irregularly), Passing large amounts of urine or feeling very thirsty most of the time, Abnormal psychological behaviour: depression, psychosis, delirium, confusion or hallucinations; all of which I had been experiencing and now my ultimate risk was an instant heart attack. Unfortunately, I’m the same way as being on the ward, a trip to A&E meant being stuck in the confines of a hospital bed receiving hour after hour of treatment; again a situation I’d find hard to handle. As I had done in the past in this situation, I stayed for the bare minimum of treatment and always managed to talk my way into being discharged. Except this time my levels weren’t recovering quickly enough and the doctors weren’t happy to let me leave. If I did try to leave, in all likelihood I’d be sectioned. This may all seem very irresponsible on my part but my intention has never been to escape the treatment I know I need. I simply cannot describe the level of distress I feel in situations of confinement or a prolonged amount of time virtually anywhere. ConsequentlyIt has been noted that I may be in line for a diagnosis of Adult ADHD. At all stages I have tried to explain to doctors and clinicians that I know I need all the kinds of treatment on offer, but it has to be carried out in a way in which I won’t feel restrained.
During my 2 day trip to the hospital, I’d made my mind up that I would discharge myself from the Phoenix Unit as soon as I got back. And that’s exactly what I tried to do; except for the fact that my attempt prompted a Consultant whom I’d never met in my life, to place me under section 2 of the mental health act. I was beyond frantic and distressed to say the least. I tried to explain that I’d be willing to come to the unit every day for the treatment program but that all I wanted was my own bed at night in my own home. But man who had never met me the individual and never assessed me personally deemed that my life was at risk as a result of my actions. I know doctors undergo many years of training to qualify them for the fantastic work they go on to do in many specialisms; but at times there comes a point where pontification is the only word that I can use. Especially when someone’s freedom is taken from them under law by the reckoning of one man. A kneejerk reaction. Section 2 placed me in the hospital for a further 28 days of assessment at least and did this consultant have any hands on input into my treatment over that time? Of course not and I barely saw anything of the consultants who’s final words often left patients in tears when all they wanted was to be allowed 2 hours outside the hospital grounds let alone a weekend at home with their families.
Though my story has many more parts and elements that I’d like to add, I will drawer it to a close at this point. I hope I’ve been able to paint a picture of many things; eating disorders, diabetes and mental health services. In my case these 3 elements have converged in a way that shows me the need for mental health provisions and the NHS as a whole, to work on a program of better training staff in how to treat diabetes; especially if you are going to take responsibility for its treatment. Not just in mental health but all hospitals. Perhaps separate wards need to be established to treat diabetics with eating disorders as it carries so many other complexities. The system needs to change dramatically. To end the culture of trying to cover everybody’s back and to look at the needs and desires of every single patient as an individual. I may be wishing for a utopia but I can live in hope.
To you the reader; thank you for taking time to read my piece and please do research anything you might not understand or want to know more about.
Latest posts by Tom Fealy (see all)
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- WELL-BEING | EATING DISORDERS…BY ANY MEANS — March 7, 2018
- Talking Diabetes, Eating Disorders and Mental Health — March 2, 2018