To the precious ones

I was just discharged from an eating disorder inpatient unit after spending four and a half months there. It feels like it took me so much longer to get here, and my recollections are patchy and blurred. It’s only recently the fog is starting to thin, and my brain hosts a bed from which seedlings of hope and self-belief are tentatively beginning to sprout.

I feel scared. This was only the start of what will undoubtedly be a long and exhausting journey as I try to get better. I am a weak swimmer that having cast aside my armbands still needs a surround of floats to clutch onto., and I’m still in the shallow end.

I also feel sad. Suddenly alone and missing a foot. Uneasy with how quiet it is.

I wouldn’t have made it this far without the solidarity and invaluable support provided to me by my fellow EDU patients.

This is to the precious ones.

The ones that held me up, that listened to me cry, that listened to me talk.

You made me laugh, and laughed alongside me. You made it feel okay to laugh.

You offered a smile, a hug, a “it will be okay”, a knowing look.

You encouraged me, applauded me, reassured me. Understood me.

Every one of them has made a difference to me in some way. I am truly grateful to them all, and thankful.

The best of people are the ones that struggle to see it - which breaks my heart. They are the most unique, the most memorable, the most talented. good natured and worthwhile.

I will miss then, I will think of them often, and sometimes “goodbye” is jrather a “see you on the other side., where we can start creating better memories.”

By Claire Kearns.

Clouding Over

The Reality of Retinopathy

(Please ignore typos/errors, I have a good excuse!)

I never meant to do this. It wasn’t supposed to go this far. This was not the person I ever imagined myself becoming. But I am here and it’s happening and I am terrified. I hit a concrete wall, smacked my face hard against a reality that despite being in front of me I did not see, literally could not see.

In the beginning I was just flirting. Experimenting with diets and slight adjustments to my insulin plan, a trim of some units, a lie here and a secret stashed away there, but it was nothing serious, I just wanted to lose a bit of weight and then I’d stop, right?

Here we about 17 years later. The start I mark as September 2001: the implementation of my back to school “diet which soon became bulimia, then anorexia, with spurts of Diabulimia and erratic blood sugar control throughout. I don’t know how I even got here. I can’t even understand how or why or where all those years went. I feel cheated. I am not this age, I did not live those years. It’s almost like I’ve been comatose as each day ad month fell into each other beneath a fog.

21 years of type 1 diabetes. Oh, it’s been a strained relationship, one of resentment and bitterness. I’ve pushed and I’ve kicked and I’ve denied its existence. Now it feels like it’s paying me back, reminding me of my neglect, the damage I’ve caused. It’s pointing and laughing and saying, “Ha! Thought you were invincible huh?”

In the past I’ve shrugged off the complications that have been caused by my eating disorder and diabetes. I’ve not been so bothered by them, and scare tactics or warnings relayed to me by health professionals, my friends or my family have had little effect. Part of it is because I don’t care much about myself, and partly because I have the tendency to put my head in the sand ingrained in me. So, I shrug things off and say oh it’s nothing serious or I am not worth the worry anyhow.

But when the issue is right ahead of you, blocking your view and pressing on your brain, it’s impossible to ignore. My eyes are failing me. I’ve had diagnosed retinopathy for a couple of years now and undergone 4 bouts of extensive laser surgery. I’ve had numerous floating islands and wispy strands of black appear at the backs of my eyes that have mostly dispersed gradually or been corrected by laser. sessions My left eye has always been worse and this time it is chief troublemaker. again.

During the evening of Friday 27th July, I noticed blurriness over my left field of vision and it seemed to gradually thicken throughout that evening. I struggled through Saturday hoping that it would break up and dissolve like the similar patches I’d had occur. But it stayed put and on Sunday seemed to be even more serious.

This prompted an A&E visit, a 7-hour long day, out of hours on call eye clinician, and relying on my patient brother to take me and stay with me.  I was utterly exhausted by the end of it all.

The verdict was that I have a huge bleed right on the macular of my left eye and I cannot see anything besides blurriness out of that side. I was told they could do a procedure to break up the bleed but that nothing could be done outside of regular clinic hours and so I’d be given an urgent appointment that coming week.

Three appointments followed, and it was determined that I most likely needed to have a vitrectomy operation as the bleed was just too large to attempt anything less invasive.  For that I was to be urgently referred to a London specialist hospital.

I waited, and I waited.  Finally, the week before last, I chased them with a phone call to the London hospital. They had no recent record of me, they’d not heard a thing. I went back and forth and back and forth between secretaries and appointment staff on both sides and discovered that my local hospital had messed up big time. A letter has been written on the 10th and yet London hadn’t received it, and neither had I a copy of which I’d been expecting, suggesting this wasn’t just a case of lost mail within the system. It wasn’t sent.  I eventually had to ask them to email it directly over and so the date it reached the intended destination was the 4th September. I now have to hold on an additional two weeks for their allowed response period. It’ a bit of a joke.

These are boring details, but hard to explain the current situation without the lead up. I started this blog with a centre to reach but have lost myself a bit. But that’s a fitting place to be. Lost. I feel so very lost at the moment.

I am wandering aimlessly, disoriented, dizzy, drifting and confused. From my left eye the sky is only indistinguishable by colour and direction, from the ground. I can see a waving hand but not the number of fingers held up. I can see a bright light but no letters on the reading chart. I look at a word, or a sentence and the middle part is all mixed up with pieces missing. Then today, actually within the last 3 hours I can now see a black inky puddle floating ahead of my right side of vision. Just…. no.

This is me admitting I am scared. This time I am fretful. It has been raining heavily for a decade but the damp is only just soaking and sinking in.

I am a reader and a writer. Those two things are what I love to do. I feel stunted. All I am doing is watching endless TV shows, as I can see moving shapes as long as there’s no text. I can’t work at the charity shop I usually volunteer at because I am not safe. I am clumsy and have broken too many dishes and dropped so many items over the last month or so. I struggle to read cooking instruction labels and unscramble the digits of telephone numbers. Typing is made easier, with autocorrect and spell check but it is an effort and mentally exhausting. I won’t manage to proof-read this, so please forgive any mistakes for which there may be plenty. I guess I just wanted to put some words to screen because that is possible as far as I can mostly make out which letters are where with my right eye and from memory. Checking back over it is harder.

I want to take it all back. I wish I could time travel and be able to shake my naive 14-year-old self back to sense, right at the moment I stepped over the edge. Like I said, I didn’t mean to do this. I was only trying things out. By this age, I would have a career and a relationship, maybe a family. I’d be successful and able to be a proper adult. That was the plan. But it’s faded to dust in my hands. I want to rewind and stop myself right at that line that was crossed. I want to say,

“It’s not worth it, it’s a trap, come back, talk to someone, get help.”

By Claire Kearns.

Complications, scare tactics and survival

I’ll go blind or lose a leg if I don’t take care of my diabetes: that’s the one lesson I feel I took away from information given to me when I was diagnosed in 1997, just prior to my 9th birthday.

It’s all quite a blur but I remember those warnings. I remember feeling small and not understanding what I had done to deserve it, why me? Feelings of insecurity, self-doubt and hatred that would later fuel the beginning of my eating disordered behaviours had already started to simmer away in the background. For a long time I was in a state of denial, a little of which still remains in me. I used to pretend I wasn't any different to anyone else.

Language matters. Certain remarks are always remembered: I can vividly recall attending my diabetic clinic appointment at the age of 14 and just prior to the emergence of anorexia. I was at the upper limit of the healthy BMI range and my endocrinologist told me to be careful not to put on any more weight and that losing a few pounds would probably be beneficial to me. The next time I saw that doctor he congratulated me on the far lower number on the scale. He’ll have had no clue whatsoever as to how those words stuck with me and made me so fearful of becoming fat as I started to starve and shrink.

It seems that care has improved quite significantly for children diagnosed with diabetes these days, and the structure of treatment has changed: We no longer have to take set amounts of insulin and so stick to a regular, proportioned diet. Instead the basal and bolus routine means we can adjust our doses and take the right amounts needed to cover any kind of food we want to eat. Advances in technology such as pumps and CGM’s provide even more flexibility and some freedom from feeling so much like a pin cushion. But the rhetoric of blame and guilt for having diabetes and furthermore, the complications it causes is still put onto us. Most of all by the media and carried by members of the public that consume those headlines and read or hear inaccurate reporting regarding diabetes and so just don't know any better. The diabetes community which is most active within the social media sphere is fully informed and yet the ignorance that falls outside of that is still damaging and hurtful.

I see a lot of coverage of the potential complications of type 1 diabetes, even from charities and such that do it in a sensitive manner, but still I don’t see too much out there on management of them, advice on how to cope with additional chronic conditions in both a physical and mental sense. This is important and there needs to be guidance and resources available.

DWED are in fact in the midst of the production of a series of content packages which highlight on 4 separate common complications – these materials are available to our members. We have covered retinopathy, gastroparesis, and neuropathy so far and next we are moving on to nephropathy. For this I have interviewed a number of people with T1ED as case studies who also have direct experience of these complications. Common themes have emerged which also mirror my own history: shame, embarrassment, frustration at the false assumptions that other people around you may make. But also there’s hope, there’s perseverance and bravery.

Still, it can be too simple to think you are invincible and don’t need to worry about any of the longer term ramifications, not just yet. You aren’t at your goal weight yet. You’ll totally stop this stupidity after you’ve made it there. You’ll recover and graduate and be in your chosen career - you’ll be a proper adult, right? But months tumble into each other and then into years. You look back and think ‘damn, I really didn’t mean to do this.’

With complications you can feel totally safe until the **** hits the fan. Sorry, no way else I could put that! You don’t ever know when or what will come first, everyone with type-1-diabetes is different. Every time a new issue crops up I still feel like I am making a big deal and using up valuable appointment slots that could be used for other people. Again, that’s the sneaky self destruction in me. I know it too, but that doesn’t seem to make it any weaker.

I think that for people who also have an eating disorder the onset of complications often seems to come alongside a sense of fault and failure. Failure for being unable to control and cope with diabetes in the way they “should” do and putting themselves at risk through insulin restriction for weight loss purposes (“Diabulimia”) or/and the more ‘typical’ disordered eating behaviours such as purging by vomiting or cutting down food intake and calories [T1-ED].

T1ED can stamp you down with a double dose of guilt. Despite what other people may think about diabetes and the misinformed judgements they might make,  anyone that lives it knows the real facts, eating disorder or otherwise: That type 1 diabetes is not caused by poor lifestyle choices, and cannot be reversed or prevented. Yet, what about the complications it may lead to? You can never be certain as to when they may have developed and whether your eating disorder means you are experiencing them at an earlier rate. Honestly, I’d guess from hearing other people’s   experiences, for most it will be a definite contributing factor. For that you might feel real, raw guilt, guilt that feels more justifiable in comparison to the irrational-that-you-know-is-irrational Type 1 Diabetes guilt.

But is it, really?

An eating disorder is a mental illness and can feel all consuming. In the beginning you don’t think of the future, of still being ill in ten years time. Of having to deal with neuropathic pain and frequent laser eye sessions, a stomach that doesn’t work properly and can lead to quite unpleasant effects, far from glamorous or just that little thinner and fitter, like you intended to be. You don’t even consider that you might have to someday walk with an aid and not be able to go far on your own. But this is the truth of it, and I am merely glossing the surface. An eating disorder is sneaky, deceptive and can prevent the ability to seeing any kind of wider perspective Your world revolves around food and numbers and secrets, avoided diabetes clinic and nurse appointments, pretending you’ve taken insulin or eaten, or not eaten (after binging), lies that fall out your mouth with added embellishment for authenticities sake. It can make you feel completely powerless.

Confirmed diagnosis of complications may help or hinder someone attempting recovery from an eating disorder/T1ED or Diabulimia. It may feel they have been given a concrete reason that they need to try to take better care of themselves and so reduce further risk. On the flip side it is common to feel defeated and damaged beyond repair. From a fast moving car you look out the passenger seat and lose yourself in your own heads, until your body becomes so tired and the dissociation begins to lift – you notice the trees, grass. The breeze against your face and realise that none of it was ever worth it. You climb into the driver’s seat and try to steer but nothing is familiar. You want to stop and breathe but you realise the brakes are faulty; you’ll survive mostly unscathed after crashing the car against a safety barrier.

Nobody means to end up with a list of complications that for some reason seem to all hit at once like falling dominoes. Take me: coincidentally I’ve had a horrendous week with neuropathy, quite possibly due to medication changes. On Friday my balance was so compromised that I couldn’t walk in a straight line or hold myself up, and the pain felt unbearable – numbness and pain consecutively which seems like a contradiction but you’ll know exactly what I mean if you’ve been there. Next thing was on Tuesday I noticed another black ‘floater’ in my left field of vision so have an emergency eye clinic tomorrow.

I can’t really say how it makes me feel. I’ve had retinopathy for a while and three laser surgery sessions, but I’d ever been through neuropathy to the degree where it left me pretty much incapacitated. I did feel momentarily scared, when it was happening and my balance was totally off kilter, but that floated away and I am left with numbness, a whole lot of nothing, to a degree where I am almost nonchalant about it all.

The main element I wanted to bring into this is the effectiveness (or not) of “shock tactics.” I have recently concluded that I am pretty much immune to them. I think this is for two reasons: the first is because I have trouble giving a damn about myself – all that mental health head crap. The second I feel may be relevant to other with type 1 diabetes that were also told the horror stories growing up of losing legs and eyesight and even becoming bedbound. Some like me may have heard such horror stories numerous times over., thrown at you during another attempt to give you a 'wake up call'. It all gets a bit old. It perpetuates the isolation we already feel from the people around us without type 1 diabetes.

We know all the risks without even reading sensationalist ‘real life’ type stories. We are the experts of our own condition. Personally, nothing anyone could say to me in terms of possible dangers of  mismanaging my insulinr would ever faze me.

This is something I wish my family and some friends could accept. I KNOW it comes from a place of care, but the things they can say to try and jolt me out the eating disorder I’ve had for over half my life, and make me face up to what I am doing to myself. I don’t need that. It doesn’t help, and it can actually hurt. Instead I need to be listened to and be able to rant about type-1- diabetes, about neuropathy keeping me awake at night and blurred vision that means I have difficulty reading some labels. Being told I brought this on myself just makes me want to withdraw and beat myself up inside a little more. The bottom line is that shock tactics have no influence on me beyond causing upset. Too many lectures over the years have worn me down and people should save their breath.

I’d be interested to know if this immunity to ‘scare tactics’ is a trait many other type 1’s feel they have. Do you suddenly ‘wake up’ and tighten your monitoring and dosing accordingly if you develop signs of complications? Furthermore, if people tell you that you might need amputation one day or lose your sight is it effective in causing you to act and try to regulate your sugar levels? Or is it support and an acknowledgement that you are doing your best to get through the days that is more useful in helping you to start making changes? I wonder if this is different for people with T1ED due to the influence of how we feel about ourselves.

The names of diabetes complications are not even of use, really. It’s the impact they have on us and our general quality of life that counts. Burying our heads in the sand is no use, but still, there is no need to catastrophise. Complications may not be completely cured but they can be treated. Health Professionals have the means to try and stop progression with medications, changes to diet for gastroparesis and procedures for retinopathy ranging from laser eye surgery to vitrectomy surgery.

Complications are not a death sentence or burdens weighing us down. Every single person I interviewed on the subject was surviving despite really tough circumstances. Type 1 diabetics are the strongest people I know and stronger more for dealing with such life altering complications. We keep going and even on low days, we don’t give in. We hold each other up if we need to and remind each other that guilt and blame has no place. Dwelling on what might have been is futile.

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.

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.

Depression, diabetes and eating disorders

Depression: another big D word and largely silent, invisible illness. Standing alone it can be emotionally devastating and incredibly difficult to cope with. With diabetes involved, depression is often given further means to fester and grow quite dramatically, with stable blood sugar control often overlooked or given less attention than it needs to have. Most recent studies show that depression is twice more commonly found in individuals that have diabetes than those without. It has also been reported that around one in three people with long term chronic conditions experience poor psychological well-being, compared to one in four within the general healthy population.

But why? And how do we address it? Uncontrolled diabetes can be problematic enough to treat, especially with many health practitioners not addressing the emotional roots of the diagnosis at all. A dominating precense of depression can cause the pro-active approach a diabetic needs to take can fall easily by the wayside, with self-care becoming a burden. Of course, such despondency can often be a part of someone experiencing diabetes with an eating disorder as well. Depression, diabetes and an eating disorder make up a dangerous mix whereby each condition can be fuelled by the others, maintaining a cycle that is difficult to break out of.

Despite the high numbers of diabetics that also experience depression, any information available upon diagnosis is sorely lacking. You are typically given all the education that you need in relation to what insulin to take, what to do in cases of hypo or hyperglycaemia and which snacks are better than others, but what about the emotional issues? It seems quite rare that any insight or support is provided to acknowledge what coping with diabetes can do to your head.

Undoubtedly the realisation that type-one-diabetes is an incurable, unrelenting illness which will be with you for life can be difficult to accept at diagnosis. Then there's the possible perceived alienation from peers, the confusing and unanswerable question of 'why me?', the loneliness and isolation of it all. Furthermore, there is the urge to be free and able to do everything your friends can do without having to stop and test your blood/inject/eat every few hours. Such yearning can trigger a sense of denial and rejection of acceptance: what blind-sighted health professionals can term “non-compliance”. It can also be hugely challenging to deal with the influence of mixed media messages that can spread ignorance to the public and the barrage of unhelpful, intrusive comments that may come from the people around you. Nobody seems to tell you about any of this in the beginning.

Of course, this isn't always the case, some people do have good accounts of the process, where the right resources are offered and they feel supported. However, for every success story, there seems to be several other cases whereby a newly diagnosed diabetic is given a few leaflets, a clinic appointment in four months, and is then sent on their way.

Diabetes UK explains the following on their website: “Everyone reacts differently when they hear the news that they have diabetes. You may be initially overwhelmed, shocked, afraid, angry and anxious. Some people go through a stage very similar to mourning – as though they are grieving for lost health. “

Diabetes can also become a tool for self-harm, with suicidal behaviours complicating the issue even further. As well as the highly dangerous practice of omitting or reducing insulin which can be largely associated with an eating disorder, a sufferer of depression may misuse their medication in other harmful ways. This could be by overdose or purposely prolonging a precarious state of hypoglycaemia. Depression can jump on diabetes as a way of pushing the boundaries of life to a desperate and potentially lethal knife edge.

Patience Blystone spoke of how at the height of her illness depression provided her with yet another tool to hurt herself with: “Along with my eating disorder being shown through poor diabetes control, my depression has done the same.... Whether it's me screaming out for help or to be noticed, punishing myself because I feel I deserve that, or just neglect because I can't muster the energy to take care of my body.”

Talking about how she is now able to manage her depression more appropriately through an on-going process of recovery, Patience said: “I've coped with it by finding out what makes me depressed. I am a huge perfectionist, have terrible anxiety and in general am very pessimistic towards my own life. By realizing that setbacks won't ruin my life or make people dislike me, I've managed to always feel the need to be perfect. I can tell myself 'Well if this goes wrong I have THESE alternatives' and move on. My anxiety is a daily battle of tiny bouts of courage, tears, yoga, and just pushing past my comfort zone. And the being negative is just a day by day thing. I find if I enjoy the small things and try not to focus on the hard problems for too long it lessens.

Lucy O'Meara also believes that diabetes has played a role in the development of her depression. She talks of how the condition “majorly decreases (her) motivation which makes relapsing more likely and diabetes control go out the window.” Kayleigh Lovell, who was diagnosed with both type-one-diabetes at the age of six believes her own severe depression started gathering roots at the same age. “I find basic tasks like brushing my teeth or getting dressed almost impossible so taking care of my health is difficult. My eating disorder, OCD and depression have always prevented me from making my health a priority.” she says, “I often feel like I am committing a slow suicide.”

This is not to say that advances in treatment settings are not happening. Recent years have seen the link between psychology and diabetes being considered a lot more has been previously seen. Reports on the association of disordered eating have been a small part of this. Most significantly the National Institute of Clinical Excellence (NICE) released new guidelines which outline the importance of psychological support for children and young people with diabetes. They also updated their existing recommendations concerning this area in relation to adults.

But we need to continue making a noise.  Progress is being made in ripples but we need a crashing wave. If you are reading this and suffering from depression please speak out and don't be afraid.  There is nothing whatsoever to be ashamed of.  Vocalise your distress, shout about it if you must. Go to your GP, diabetic nurse, consultant or even a friend who can advocate on your behalf because you shouldn't have to suffer alone. Nobody should have to suffer alone or in silence. You deserve to be heard.

By Claire Kearns.

What Not To Say To Someone With Type 1 Diabetes and/or an Eating Disorder

Knowing how to talk to someone struggling with a serious mental illness such as an eating disorder, or even an individual with just type 1 diabetes alone can be a minefield for family and friends. Both conditions are regarded as invisible illnesses that are often misunderstood. Innocent comments can quite easily be taken the wrong way entirely. My eating disorder will reframe and misconstrue anything it can potentially collude with and use against me. You somehow become psychic and can read minds. It’s often the case that I know I am being duped but I’ll gladly fall head first down that rabbit hole.

So that said, these are gentle suggestions of what not to say to someone with an eating disorder, type 1 diabetes or a comorbidity of the two. Mostly those flippant remarks that that can’t be caught until they are said out loud and then realisation hits. But sometimes it can be ignorance, it can be frustration and anger and shock tactics, none of which work but all of which are born from desperation.

I hope this might be of use to individuals in a supporting position for someone who is ill. Often the way our minds twist things can make absolutely no sense. These pointers are devised through not just my own experience but that of other eating disorder sufferers I know of, voices from some of my close friends, some that I have met in treatment settings, and also members of the diabulimia online Facebook community.

Please feel free to add any others you think are important via our social media pages and share this with your spouse, parents, siblings, your best friend or anyone you think might find them to be of use. My personal commentary is in bold

1.   Try to avoid diet talk. Yes, sadly it’s normal. It’s messed up but it is inescapable. Women in coffee shops opting for skinny milk because they think they need to lose a few pounds or gaggles of young girls asking “do I look fat in this?” as they stand in front of the changing room mirrors. Gutting, but that is the reality of it. Still, making an effort not to talk directly about weight loss and diets to someone with an eating disorder is important. We have enough of that talk going on inside our heads to contend with. Especially don’t ask us for diet tips. Actually, this is never okay, to anyone, as you never know the reasons behind weight loss, or gain for that matter

2.   Further to this, a bit of a difficult one that mostly applies in early recovery when an eating disorder sufferer is struggling to accept their body and the guilt that may come alongside eating and accepting insulin. “You look so much better/healthier/brighter/your face is so much fuller!” Okay so we might know these are intended as compliments, they show compassion and the fact that someone may be so relieved to see you looking better. But again, someone with an eating disorder can manipulate those words automatically. We might hear “You look fat”, “you must not be ill anymore.”  I also know that these kinds of things can be said when actually someone is looking horrendous, as some kind of way to displace that awkwardness and reassure when someone appears to be evidently struggling.  “But you don’t LOOK sick” is another jarring one that can often prompt the automatic thought of “Oh well I’ll show you what sick is.”  Outside appearance can also be deceptive; a diabulimic may present as okay on the outside yet be in acute DKA and in need or emergency assistance. Ultimately, any kind of commentary relating to appearance around someone with an eating disorder should be vetoed wherever possible. Positive or negative, we can take it the wrong way.

3.     To a type 1 diabetic with an eating disorder: “Oh wow I could NEVER inject myself.” See the thing is, we sort of die if we don’t and we are trying to avoid that option. “My uncle/great grandfather is diabetic too but he doesn’t have to jab himself.” Yeah, wrong type. Please read a book if you care about me. “Did you become diabetic from eating too much sugar?” “Are you allowed to eat that?!” Just NOPE NOPE NOPE. Especially if you know someone also has an eating disorder. Just NOPE. Educate yourself, please.

4.   “You talk about your illness too much; you need to not be so obsessed.” Funny that, see imagine you have this thing on your back every second of every single day, it’s sort of hard to ignore. Don’t stigmatise something that many people with diabetes and eating disorders have struggled to accept and acknowledge. Let us talk, it helps and is far better than denying it exists. Living with this constantly gives us the right to moan and rant and shout if we damn want to.

5.  “Wow that’s a huge dinner.” “Ooh that looks like a nice treat!” “Glad to see your appetite is back” I have to say, this often seems to be a dad thing. A stereotypical male that is clueless about nutritional content and thinks the four pork pies he just finished were fewer calories than your sparse meal. We might have a huge plate of salad, yeah lots of leaves, some protein. Or okay we could actually be binging, but we are cringing inside already and it’s too painful acknowledge what it looks like through someone else’s eyes. As with the point about body comments, just refrain from commenting on our food unless we specifically ask for your help or guidance, that has to come from us. Don’t be the food police, as it can cause us to want to isolate even more and protect the disorder, as twisted as that sounds.

6.    “Please eat, for me? What did I do wrong? Why are you doing this to me?” This one is a hard one, often from a parent that feels helpless. Personally, the hardest part of being ill has been the hurt it has caused to my loved ones. But it is not about you. Regardless of any relevant cause factors, it comes down to the way WE react. To suggest we would do this to ourselves to spite another person can be painful when most people with eating disorders only want to hurt themselves. It is a mental disorder and rational thought is completely compromised. It can be so powerful that you just don’t realise it’s pulling the strings, and that the control you believed you had was actually your eating disorder playing puppet master.

7.   “You just need a good burger/sandwich/slice of cake in you!" (Worse if followed by ‘love’ ‘dear’ ‘darling’) Clearly unhelpful. Eating disorders are not just stubbornness or forgetting to have breakfast in the morning. Often someone that is struggling a lot will find it a huge challenge to eat in public, and that’s not to mention the effort someone with type 1 diabetes needs to do to determine carbohydrates and insulin doses. Sometimes it doesn’t feel worth it, but we shouldn’t have to put on a show to satisfy someone else if it results in us becoming distressed. Let us be.

 8.   “If you think you are fat you must think I am obese!” Again, anorexia, bulimia, BED, and ED-DMT1/Diabulimia, are all specific to the sufferer. Body dysmorphia is very commonly linked and an eating disorder sufferer may see a different image in the mirror to what others around them can see. We are the exception to the rule. Additionally with Diabulimia the fact that eating disorders are NOT about weight is even clearer HBA1C levels being a far more accurate risk indicator. People with Diabulimia will often have huge fluctuations in weight as they manipulate insulin levels and so this cannot be used to determine how well or unwell someone is,

9. “I wish I could lose weight that quickly!” “I wish I was as thin as you” “god what’s your secret?!” Ha, you really want to know? All completely inappropriate if someone doesn’t know the circumstances being someone’s weight or behaviours. Another that links to the first is “god I’d love to be able to eat anything I wanted and lose weight.” Oh well you can gladly have my diabetes and diabulimia if you want! No refund policy though. Take the ketone breath, fluttering heart and constant thrush with you too.

10.  Being told of the damage we are doing to ourselves is simply patronising. We aren’t stupid and nothing will shock us. We know all about the blindness and amputation risk thanks. It’s not lack of intelligence that causes a person with an eating disorder to neglect their health needs. Similarly: “This could kill you, you know?” We sort of do but right now we are more focused on being thin and/or self-destructing.

11.  Last but not least and in my opinion the most grating of them all “You do realise that men like a bit of meat on their bones!” Righhht, because I am doing this to myself to snare a man, damn got that on wrong then. Again, ketone breath isn’t much of a turn on. Oh better start eating again if I want to be pretty for boys. I don’t quite understand how this one seems to crop up so often. EATING DISORDERS ARE NOT ABOUT VANITY. If they were then I am definitely going about it the wrong way as I look like crap. Maybe I’ll just tell Mum (see this one seems like a mum thing) that oh well, that’s it then, may as well become a lesbian and join the circus instead.

By Claire Kearns.

Don't read below the line

There’s been a lot of coverage relating to diabulimia in the press just recently. Certainly in light of how largely disregarded the condition has been until now, despite its staggering prevalence. It’s great to see such acknowledgment, from the BBC article that brought a tide of traffic to DWED and the Indy’s comprehensive piece, both of which used quotes from our director and founder Jacquelline Allan. That girl knows her stuff and it’s so crucial to be getting accurate information out there, especially after numerous past occurrences of grossly sensationalist reporting . The death of Lisa Day has prompted some of this. It’s disappointing that such a tragedy is the one thing that brings forth attention, when all our continuous shouting merely falls on deaf ears. But despite that I know her family are determined to bring awareness to this fatal condition that caused the loss of their beloved sister and daughter. In turn, the newly opened service at Kings College London which will treat type 1 and 2 diabetics with eating disorders is hugely positive news which has placed diabulimia under a spotlight.

However, traffic can result in road collisions. By this I mean loud voices of the misinformed and uncompassionate. Those people that will skim a story but have already formed a negative judgement from the headline. A judgement that they want to push onto anyone they can, but most of all those that they see with a spot of vulnerability.

The best lesson is to never, ever read below the line. But it’s that self-sabotaging nature in me, and so I need this space to rant a little. Even if I fear I may just be preaching to the choir.

Eating disorders are not a result of stupidity or ignorance. On the contrary ,it is a proven scientific fact concluded through various different studies that the majority of sufferers actually have a high degree of intelligence. I have never met anyone with an eating disorder that is not smart, some to the point of intimidation. Instead, I have met so many talented people through treatment experiences and online support communities. These people can be great scientists, artists, writers.  

It is often the case that people that develop eating disorders actually think too much. Minds full of numbers and weights and ratios are not idle. Instead, they are over-occupied, fixated, obsessed. If you bring type 1 diabetes into the mix, the need to be clued up on nutrition and the mechanisms of your body is pertinent. You do not have the option to avert focus from any of that, and diagnosis can be a hugely overwhelming time. Furthermore, with diabulimia, insulin manipulation is a not a simple equation.

Manipulation is often the fuel of an eating disorder, it feeds and sustains it. You can become someone you do not recognise, and do things you would never dream of as a healthy person with a healthy mind. Deception is never a game for the idiotic, it is clever and sneaky. You learn to lie with conviction and run rings around those around you. You become the master of trickery. All the while you are blind to the fact that a mental illness is pulling at the puppet strings attached to your limp feet, legs and arms.

It’s not a choice. It is not a decision made with any rationality. Someone with an eating disorder and diabetes is not choosing to not take their insulin just because they can’t be bothered or want to throw their toys out the pram (in this case syringes and test strips!) They are not just being ungrateful for that crucial life source which is now so luckily available. The discovery of injectable insulin to treat diabetics is meaningful to everyone that has to rely on it to survive. But with a mental illness, with an eating disorder, survival is not a priority. It’s also not just “another label” that can be lumped in with anorexia and bulimia when it has characteristics that require treatment to be specifically tailored.

The roots of any eating disorder are deep and heavy. It isn’t an illness that just sits in a shallow pool on the surface but it is all consuming river. It is not vanity, or selfishness, or a fad. It is not just about appearance. Everyone that suffers from an eating disorder will have their own stories to tell and different reasons as to why they developed one. Often these psychological origins can be tangled and extremely difficult for the sufferer to try and unravel. 

“All diabetics have to do to stay on top of their health is take insulin” read one comment beneath a recent article on diabulimia. Firstly, this shows a huge disregard for the impact of type 1 diabetes as it is about so very much more than that. Secondly, again, someone with diabulimia isn’t just a diabetic, they also have a mental health disorder, meaning they do not think logically or the way that any mentally well diabetic usually would.

Ultimately, all I ask is that if you don’t know about a condition such as this, if it’s something that seems beyond your scope of understanding, please do not automatically judge. Do not assume. Instead, listen, try to learn, have some empathy. You do not know the influence that harsh, unkind words can have.  We are not all delicate flowers and Dave or John from Manchester and Bognor Regis aren’t necessarily going to bring forth tears. Still, ignorance spreads like wildfire, and if someone we care about adopts a similar view, well yeah, that can hurt.

I’ll end this with a suggestion: Just don’t read below the line, especially if it’s The Daily Fail online.

By Claire Kearns.