Talking Diabetes, Eating Disorders and Mental Health

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 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

Latest posts by Tom Fealy (see all)

• POETRY | ‘IF YOU’D TO REVOLT, THEN LET MY PROB­LEMS BRING US ALL TOGETH­ER IN COM­MON’ — July 2, 2019
• WELL-BEING | EAT­ING DISORDERS…BY ANY MEANS — March 7, 2018
• Talk­ing Dia­betes, Eat­ing Dis­orders and Men­tal Health — March 2, 2018