Talking Diabetes, Eating Disorders and Mental Health

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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.

Big luv

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Tom Fealy

Tom Fealy

Tom is a freel­ance film­maker and works in TV pro­duc­tion. He is also a plac­ti­cine cat. Tom is inter­ested in social and polit­ic­al issues and and plans to use his know­ledge of film pro­duc­tion to explore them to make changes for the bet­ter. As well as telling the story of that little known plac­ti­cine cat. Get in touch @raggamuffinfilms on Twit­ter to col­lab­or­ate

About Tom Fealy

Tom Fealy
Tom is a freelance filmmaker and works in TV production. He is also a placticine cat. Tom is interested in social and political issues and and plans to use his knowledge of film production to explore them to make changes for the better. As well as telling the story of that little known placticine cat. Get in touch @raggamuffinfilms on Twitter to collaborate