What's In a Name?

“Some of the most wonderful people are the ones that don’t fit into boxes.”

That’s one of my favourite quotes by Tori Amos that celebrates those of us that feel alien or abnormal as wonderful freaks. It rejects the idea of fitting into moulds or being confined and rectangular. I don’t like the idea of type-casting people and stamping their heads with statistical criteria. This very much extends to the notion of diagnosis, particularly when it comes to mental health.

Why? Because it feeds into the concept of being defined by a disorder and having it steal identity. Nobody is the sum of their eating disorder, their depression or personality disorder. It may feel like you have lost yourself when you are entrenched by your illness and diagnostic labelling can exasperate that. The case may be especially true when it comes to eating disorders that are distinguished by weight guidelines that seem to categorically define you al too easily.. It has always seemed bizarre to me that you can be a bulimic one week but a few pounds less the next and you are suddenly ‘anorexic type 2, (with binging and purging). Of course as much as we might deny that weight matters in determination of how sick you are, that anorexia classification is a prize in place of bulimia, when weight loss is always the sick goal.

But someone with type 1 diabetes shouldn’t be given a diagnosis or either anorexia or bulimia, even if those disorders are recognisable by behavioural features. A person with type 1 diabetes and an eating disorder always needs to be treated in a different way to someone without diabetes. This is why we actually DO need some official terminology.

Diabulimia is not the best term for a number of reasons that I won’t go into now, but it’s something that has become familiar, largely by way of the media. ED-DMT1 is a foreign language to most people, fairly so as it’s a clunky mouthful of a word and so T1-ED is a better fit and literally states what is in the tin, Type-1-eating-disordered.  Regardless of what it is, we need to have SOMETHING formally recognised and defined by clinical features as a matter of urgency. The lack of such is costing lives. People with diabetes and eating disorders that are in serious need of sufficient care are being routinely overlooked dismissed and invalidated by doctors that can’t distinguish an issue worth dealing with, ir's one that they cannot put in a pin into or find in their medical books. This kind of reaction from health professions can be hugely damagiing and make someone feel even more reluctant to seek out help. It can lead to the false conclusion that their problem is not a serious one as a disordered mindest creeps in too easily: a toxic, irrational voice  whispering that you are not sick enough or worthy of support.

A concrete diagnosis would make the medical profession sit up and listen as well as providing those with T1-ED with the means of validation. It would open the gateway to appropriate treatment facilities and become simpler to explain when raising awareness and informing those that are unfamiliar with it as an illness.

 But furthermore, setting parameters around the means of identification are important. By this I mean distinguishing exactly what T1-ED consists of. It should ideally contain subtypes for anorexia and bulimia that run alongside but not separate to type 1 diabetes. Insulin omission or ‘diabulimia’ certainly needs to be pinned down by a particular number of omission episodes, because of course missing an insulin dose one time does not mean someone has diabulimia, just like one episode of self induced vomiting does not equal bulimia. Other documented factors may involve a fear of insulin and rejection of diabetes care services.

I still don’t like labels.  I feel that classing someone as a person and not a diagnosis is important. Essentially, I feel that patients should always be considered individually rather than being lumped into a pile with others that share a diagnosis. No one person with an eating disorder is the same as someone else and so treatment should be tailored accordingly.  This means listening, and allowing doctors the time to do so. Evidently an injection of NHS funding could not come soon enough.

So, what’s in a name? Nothing, yet absolutely everything.

By Claire Kearns.

 

My Recovery From Diabulimia

Please read this story of hope shared by one of our members. Recovery is possible.

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 My story is much like that of many others with type 1 diabetes.  I had just turned twelve-years-old when I was diagnosed and had no clue what I was doing but I checked my sugar levels and aimlessly injected random amounts of insulin in the hope I was getting it right.  Two years down the line the only thing I#d ever heard at my regular clinic visits was “you need to lose weight”.  This became something I rebelled against in the years that proceeded. This in the form of eating anything and everything, avoiding clinic check-ups and telling lies to the healthcare professionals and worst of all my family.

I got to a stage where I never checked my sugar levels and no longer took my background insulin.  I knew I was making myself Ill but found it hard to get back to a routine because I never really had a routine.  The advice I had been given as a newly diagnosed T1 was completely wrong by today’s information and knowledge into the condition.  I took the courageous step of writing down how I felt and what I was doing and gave it to the diabetic specialist doctor.  She was very kind and told me it was okay but nothing else was said and I was given no guidance.  I felt let down.  I continued with my life and no positive changes were made as I didn’t know how to do it on my own.

I started to cut back on the amount of injections I was taking after a trauma in my life.  My big brother passed away and for the first time in my life I didn’t turn to food for comfort, I felt the complete opposite and found I couldn’t eat without feeling sick.  I started to lose weight and it felt good but felt I needed to lose a lot more weight as I had reached my heaviest.  I became obsessed and found out that the less insulin I was taking the more weight I lost.  I regained my appetite and liked the idea that I could eat what I wanted and kept my weight low. 

By the time I hit the age of 27 I had it down to an art and had lost a large amount of weight.  I loved hearing people gasp and telling me how great I looked.  Someone told me in disgust that they could see my collar bones but this only played to my ego and I took it as a compliment.  For the first time in my life I could wear beautiful clothes, men found me attractive and people were telling me I looked great.  At this point I wasn’t suffering any side effects unless of course you couldn’t tolerate feeling extreme thirst, nausea and exhaustion.  I continued to live this secret life and lied to everyone that it was easy: “oh I just don’t eat as much” - which I didn’t and that it was just down to walking. This was the perfect diet and I’d cracked it.

Slowly though I started to notice my hair falling out,  damage to my vision was detected and I was vomiting a lot.  On numerous occasions I tried to gain some control and sought the help of my GP who in turn referred me to the eating disorders team.  Sadly it never helped me as the only treatment available was what would be the same for an anorexic or bulimic. They didn’t understand the complexities of this eating disorder and so I gave up my visits.

I felt lost and depressed; as if nobody knew how to help me even when they tried.  I wanted to help myself but wasn’t strong enough to break the cycle, my addiction to being thin.  It got to a point where I wasn’t injecting at all and ended up in bed for a week. I was so weak and tired that all I did was constantly vomit into a bucket at the side of my bed.  One day I got in to the bath to wash and warm my frozen body up. I floated there far beyond the time I should have and the bath was so cold again it hurt my skin.  I had no energy to pull myself out of there but I somehow summoned enough to do so and wrap a towel around myself.  I stumbled through to my sofa and lay down.

The meaning of hypo awareness

This week (2-8 October) is hypo awareness week

This is such an important subject to keep talking about. At best hypos can be a irritating disablement, but at worst they can be traumatising, anxiety provoking and quite often fatal. 

At the forefront of my mind is how yes, hypoglycemic episodes can be difficult for anyone with diabetes to endure, however it’s a whole different playing field when you add an eating disorder into the mix.

A hypo launches you into survival mode. The options are simply to obtain and ingest glucose ASAP or die. There is no other alternative. But for someone with an eating disorder and type 1 diabetes this can be hugely distressing. and prompt challenging thoughts. The choice to submit and take in those calories may trigger a whole load of guilt to sit on top of that which already exists

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During my last admission as an inpatient on an eating disorder unit hypos became an extreme fear for me As I felt my hands start to tremor a sense of dread would set in as I tried to pretend it was not happening and I was no different to anyone else.. I felt guilty, so guilty, of having extra in addition f the prescribed diet. This was in a place where so many others around me were trying to trim their meal plans down as much as they possibly could. Biscuit crumbs and slivers of butter hidden in covert places, a splodge of jam left under the container lid.. Every calorie was counted and any unexpected increase in portions, or even a slice of pie that looked too large or scoop of mash that was overly heaped, often resulted in dinner table meltdowns.  

I can't deny that such obsession was inapplicable to me, but when it came to hypos, I had no right of refusal. It became quite frightening as my insulin was increased and i was experiencing hypos on a daily basis. I had to guzzle down cups or Lucozade, measured to the hundred ml (I always told them it wouldn't be enough, and so another 100ml and often yet another would follow). followed by biscuits, all while shaking and disorientated. But most of all I felt I would be judged for being weak somehow,  for giving in, perhaps not directly by my fellow patients but by their eating disorders. I felt gluttonous and so ashamed of giving my body what it needed. That’s an eating disorder in a nutshell, really.

How dare I allow myself any semblance of good health?

Eating during a hypo is unplanned, it is frenzied and without containment. It can easily lead to binging; desperately inhaling sugary foods as you try to grasp reality, often leading to high blood sugars. More guilt. Surrounded by a pile of chocolate wrappers and an empty cereal box. Emerging from a blurry, half conscious state and berating yourself for a loss of control.

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So this year, following the release of the BBC Documentary which has led to a rise rise in press and advocacy concerning Diabulimia and ED-DMT1, please consider what hypoglycemia might mean for sufferers of these conditions. Being hypo aware is about more than just having glucose to hand and knowing the signs and symptoms. For people with type 1 diabetes and an eating disorder it involves being aware of the difficult emotions that come alongside. It means accepting medicine and acknowledging that treating a hypo is about essential need, not greed. It’s about giving yourself permission to fight against that toxic 'voice' that tells you that you do not deserve to eat, to norish yourself, to live.

By Claire Kearns.

Too Many Losses

After every death by suicide or misadventure comes an onslaught of familiar comments. Mostly well meaning and kind-hearted comments but ones that also make me want to scream.

Lately, a number of these types of losses have been close-to-home. The first, around a month ago was one link away via mutual friends that were left devastated, with circumstances that resonated a little too much. The second, quite close to heart that I am still struggling to comprehend. The third, most recently made the news of my small local home-town. All of them have me poignant somewhat numb, and extremely sad. All of them were individuals that seem precious and have left a space, an ache.

Everyone reacts differently to shock and grief. No way of trying to cope, adjust, regroup, is wrong or anything to be ashamed of under the circumstances. But there are some people that will understand the pull of mental illness, and some that just cannot. There is no fault here, but I want to offer some words of clarity. Words I feel the need to say.

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The fact is that depression does not care if you are young and full of promise and potential. It does not consider that you have so much more to experience in life or that throwing your future away is 'such a tragic waste'. Neither will it grasp that you have money, a good job, a loving family or privilege over others.

Crippling anxiety cannot rationalise that things can pass, get better, that those moments of sheer terror will not overwhelm you. It will not comprehend that there are GOOD sources of help to be found, sources of valuable support and health professionals willing to listen.

Eating disorders are blind to the concept of existing without starving or harming yourself in an attempt to shrink. At their worst they will not allow you to see that you you deserve anything more but that constant misery. Anorexia, bulimia, EDNOS, BED or Diabulimia: they all have the potential to diminish your sense of worth to dust and stamp all over it.

When mental illness is at it’s most unrelenting and ferocious, it simply does not give a shit about anything besides a destruction, whether that be a way to cope or an end goal. It will take any opportunity it can to knock you over, and with every swing and punch you fall further down, further away, until you're left with a bashed up broken brain that cannot think straight.

I can see how it can get to the point where somebody might feel like they've no other option, and no strength left to fight. That is not a sign of being flawed or any kind of weakness. Rather, it is the full-force impact of defeated by something too powerful and suffocating, like a lump of coal clogging your throat.

Most of all, a message to the moronic that at times like these seem to rise from the ground like clusters of worms with their oh-so-important utterances: suicide is not stupid or selfish or ungrateful. Those views are vile and completely ignorant. Also, media, please take note that in this age describing suicide or attempted suicide with the damnation of“commit” is unacceptable, as it is no longer a criminal offence and has not been classed as such since 1961.

To the aforementioned: you are not that person, you have no right to pass judgement on them. You have not stood where they have, seen or thought what they have, or rather been unable to see what they need to.

More people need to understand of how severe mental illness can blot out factual thoughts like thickly splodged Tippex over typos.

It's a fucking parasite of a thing to have to battle with. Some do it every single day, and it can hurt like hell.

If you are one of those people then try to hold on with the tightest grip you can, and try to remember despite that stalking cloud and the trailing whispers or smoke, that you are not doing it alone.

By Claire Kearns.

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FRIO INSULIN COOLER GIVEAWAY WITH DWED MEMBERSHIP!

Frio are a company that produce insulin coolers that are recommended by hospitals and diabetic clinics worldwide. They offer a wide range of choices in shape and design to suit individual needs and preferences, from large coloured wraps and wallets to smaller pouches. They take away the need for refrigeration or ice packs when carrying insulin pens and vials for pump technology on route. They are ideal for journeys on hot summer days, in the car or packed in luggage cases, but are also recommended for daily use if required such as student halls or stays in hostel accommodation. Diabetes should never hold us back!

I tried out one of the small duo Frio’s which are able to hold either two pens or two vials of insulin. The larger wallets have room for 5 pens of 10 vials so have plenty of space for all the medication supplies you need. I use an insulin pump so a smaller pouch was ideal for me to be able to carry one spare pen and a vial of Novorapid in my bag, just for those sometimes unavoidable emergencies where you need extra insulin to hand. The Frio I chose has a decorative daisy design which suited me well, too, and it’s these individual touches that make the entire range appealing.

The Frio definitely does what it promises, and my insulin was kept completely cool. The science behind it basically involves a reusable evaporative cooler insert which activates with water.

For July DWED have 4 free Frio’s to giveaway which were kindly donated by the company themselves. Two are plain kip wallets in pink and bright green, and another is of a similar large size but is monochrome and wrapped with a pretty polka dotted bow. The fourth is a smaller one like mine but has a black and white skull and crossbow design. Please see the photos below!

This month everybody that signs up for a new membership package for just £3 a month and opts in will be entered into a prize draw to win one of the four coolers.  If you want to be part of the competition just fill in the form below and we will verify your subscription against your given email address.

Membership also as always will provide access to regularly updated premium content that is available nowhere else.  Please see more details here and after completing the payment process register for your unique log in via the user area at the top right hand of our homepage.

Good luck to everyone that enters! We will reveal winners on the last of the month via our social media pages.

For more information on all Frio products please refer to their website