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.

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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.

It's okay to not be okay

I’m incredibly tired. It’s been far too many years, and the metaphorical concept of shit sh*t hitting the fan was truly made for describing the sudden and crippling impact of type 1 diabetes complications. It feels like being pelted with bullets that are constantly firing from a smoking gun.

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But it’s okay to feel like we can’t cope, okay to feel like we need some extra help when everything feels too much right ? Even me? The idea is so foreign to me, it feels wrong, it feels like a betrayal to all I’ve ever believed, that I should seek that help.

Diabetes is relentless, all consuming, even when it exists without deep-set mental health issues.

Eating disorders are always exhausting, they strip you of strength, and I’m in tatters. It’s slow at first isn’t it? You can feel like a cat with nine lives that just skims the edge of danger, until suddenly you realise you sink in like sugar dissolving into a bowl of rice krispies, a crackling echo rings in your ears as you feel yourself questioning just how long that damage had been simmering under the surface, and every warning sign you brushed away.

I just want my brain to stop wittering at me, every day, a slow and deep hum that goes on and on. I ache inside.

It’s okay to to not be okay I am trying so hard to rewire my usual faulty belief system. But it’s like being a toddler and trying to walk and talk. I see where I want to go and what I need to be doing out in the world but I can’t will my shaky legs to move. I merely shake and continue to ruminate.

But it’s okay to admit you can’t do it on your ow anymore. Maybe me too?

It’s okay to let someone else care for you, particularly if your life depends on it, isn’t it?

Falling down the rabbit hole and embracing insanity would be a silent release, - slipping away, a relief of no longer having to try.

But there’s no way I don’t find that guilt, the shame in other places. But least of all, the fact I’d given in.. Denial just doesn’t fit me the way it used to.

Drained, wasted an wrung out like soggy dishcloth.

It’s okay to not be okay, right? To say it out out loud? To admit you just can’t do it on your own.

I’m just so, so tired. It hurts.

It’s time to take a chance. I have to.


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.

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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.

Action plan

Sometimes I worry that I’ve completely exhausted blogging about type-1-diabetes and eating disorders to death. But then when I can’t sleep at night my mind won’t shut up; it’s over thinking all of the things that I haven’t said, niggling doubts and grievances I feel I need to let out. I just hope nobody reading these blogs is sick of my rambling!

Type 1 diabetes is always there, canoodling with anorexia, providing me with the fall back insurance tool of being able to manipulate my insulin doses to control my weight.I fear hypos most of all and struggling to accept the basal adjustments my specialist nurses urges me to make. It’s still a constant battle to stay attached to my pump, and it’s disheartening to still hear ignorance and judgment on both type 1 diabetes and eating disorders wherever I go. The combination of the two still seems to be a wildly foreign concept to most members of the public that have no personal investment in the issue.

This is still frustratingly the case even after a number of notable print and online articles that have been published over the last couple of years on Diabulimia and the prevalence of disordered eating in individuals with type-1-diabetes. The brilliant documentary “The World’s Most Dangerous Eating Disorder” which was aired by BBC Three last year led to widespread acclaim and we were so pleased. For a while, with a surge in our website traffic and social media interest, it seemed like it could be a major breakthrough.

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In retrospect it merely splintered the glass surround which makes it easier for outsiders to see through but the other side which means options of treatment and true acknowledgment is still so unreachable. This despite coverage of far too many unnecessary death and statistics revealing staggering mortality rate that prove that those with T1-ED and/or Diabulimia walk shakily close against the edge of a tall building every single day.

Yet the reaction to that reality is quite predictable a lot of the time, still: “how stupid can they be? How difficult can it be to just inject if it’s a matter of life of death? Don’t they realise how crazy they are to do that?” and oh of course, there friend or relative has type 1 and lives a healthy life, their diabetes does not really affect them at all!” The eye rolling and that frustrating and wholly misjudged that is still used by clinicians: “non compliant.”

There has certainly been positive change lately and that is an achievement, small feats that add up like another stone to the fortress walls and chip away at attitudes that ultimately need re-education. More of us are asserting ourselves, challenging stigma when we hear it.  Some health providers have really stepped up and trained themselves and their teams (whether that be diabetic clinics or eating disorder units) as best as they can in the shadow of NHS funding cuts. On a wider level there have been conferences and numerous new research studies on the disorder.

Widespread discussion on the importance of the right language used within healthcare settings has been a hot topic on social media just recently. Twitterites Renza/Diabetogenic (@RenzaS) and The Grumpy Pumper (@grumpy_pumper) have been fantastic advocates on this matter, as well as Dr. Partha Kar (@parthaskar) and a handful of other HCP’s, all of which should be applauded. I only hope that this evolving dialogue continued to spread further afield beyond the tight knit diabetes community that is mostly found on Twitter or\ Facebook.

We are shouting, hollering.  Louder now after some people have begun to notice, to react, largely as a result of the documentary. Still, it can be entirely frustrating and exasperating.  It can often feel like you are left with nothing but a sore throat and strained voice as the people that should be listening walk away oblivious. It’s hard not to feel bitter, to dwell and let resentment fester.

Hope can fuel a surge in determination one minute, almost excited by the common goals, the shared anger and upset, and that camaraderie found among a group of fellows with type-1-diabetes. It can be a fierce energy that rises up and bounces back and forth with re-tweets and the swapping of blogs that for the most part, are completely spot on and relatable to you, in at least some parts.

That understanding, compassion and sense of community is truly valuable, it means we know we can fall down and be held back up. That we can feel comfortable to rant and moan about unpredictable sugar levels, neuropathic pain or even giggle over the humour of common #diabetesprobs. Plus those diabetes memes which can be hilarious to us, (well me anyway! Perhaps I’m too easily amused,) but absolutely baffling to those with functioning pancreases. I’ll never forget sending a friend some of those “diabetes cat” images and protesting about how funny they were. On the contrary, she was completely baffled and the humour I saw didn’t compute to her one bit. Not her fault at all, but hey a fellow diabetic would probably find them as funny as I do.  Is there anyone with type-1-diabetes that can’t appreciate the thought of Hansel and Gretel style blood test strip trails and those don’t-give-a-fuck-attitude ee cards (see below!)? Laughing is a good remedy.

Friends and family can be amazing when they try to appreciate our daily struggles and be compassionate, but the fact is that only we can know what it feels like to deal with chronic and largely invisible illness every day, every minute and every second without any reprieve from it. For me at least, despite a sense of patience and the fact that I know I am cared about, it is still all too easy to detect a sense that I am a miserable bore when I talk about diabetes woes. I’ve been told that I am obsessed with my own disease and need to find other things to focus on by so called friends.  I’m always complaining, and there’s always some medical pain I am suffering with. It makes me feel like a huge drama Queen and hypochondriac.

There is some truth in it, in that yes distraction can be good and thinking about your problems can make you more miserable. But the reality is that this illness never relents, and it can’t be ignored. The control it has over our bodies and our minds is like a swarm of hovering gnats hovering around us as we stand in a room with the windows bolted shut. You can swat them away but you’ll never catch and kill them. The only way to breathe is to let in some fresh air, and give them a way out. It’s not fair that we should be told to ignore the biting to the back of our necks when it just means we’ll be left covered in a rash of sore red welts. Why should we be ashamed to vent, if that is something that helps relieve the burden and ache of it all a little?

So I may have gone on a bit of a tangent here, down a rabbit hole. But I do have a point ultimately and that is the urgency of some real action. Awareness is always positive but it isn’t enough, especially when it is rarely put out into the public sphere. We need strategy, we need government action, and crucially we need the godamn media to sit down and pay attention for once. They seem to be completely deaf, the newspapers anyway, some more guilty than others of course. But every time there’s a ridiculous headline, they lump type 1 and 2 together or suggest we cure ourselves with okra, cinnamon or a better sleep routine, we make a fuss and call them out, sometimes they apologise and then a few weeks later the exact same kind of thing occurs. It’s blatantly disrespectful and insulting to be placated and then blatantly ignored for the sake of causing a reaction or even a moral uproar to stats on the amount of money diabetes care is draining from the NHS. (And yeah, better care and earlier interventions=less hospitalisation and less expenditure, isn’t it a no brainer?!)

I am saying all this but do I have any idea myself? Well yes, I do. First of all with the papers - as a DWED representative I am challenging myself to call the big wigs at some national papers and confront them on their failings. Starting with the Daily Express, yep. So wish me luck, right now a frustration is motivating me but I may want to hide scared tomorrow. Which is why I am stating this here: I will do this. I will record those calls and I will report back in a later blog.

Second is a project where you all can chip in and put your case forward if you wish. When I spoke to (the truly amazing) Norman Lamb in May for a recording which is uploaded in our members area, he offered to take DWED’s case forward to Jeremy Hunt and have it raised in parliament. This would be in the form of a letter that we will address to Jeremy Hunt that will specify just how crucial it is that people with T1-ED and Diabulimia have access to better care, which can be done with the shuffling of money, with training across the boards, more knowledge given to GP’s, AN OFFICIAL DIAGNOSIS. It may fall on death ears, but it’s worth a good damn shot.

What we need from you are testimonies that we can add to the letter. Real life truths from people with T1ED that want to push the message that further change is needed NOW, those that feel devastated and worn down, and let down by a lack of adequate support services. Submissions from friends, family and carers would also be so helpful, especially as sometimes their loved one is unable to advocate for themselves, or in the worst, most saddening instances, they are no longer with us to do so.

I will be setting up an online form for submissions in due course and will amend this blog with that link. [4/7/18: Please find the submission form here.]

Keep fighting everyone, it’s cliché but all of you out there with type-1-diabetes, with or without an eating disorder, are fighters and probably so much stronger than you believe. Hold on. Let’s act on this. We are all in this together. Keep looking at the stars instead of blackened night’s sky. We might not ever be able to shoot for the moon but we can aim for the stars.

By Claire Kearns.

I'm All Too Aware of Eating Disorder Awareness Week

This week has come around way too quickly again: National Eating Disorder Awareness Week.

*sigh*

Snippets of NEDAW specific media have been cropping up for the past two weeks and I have become increasingly apprehensive about the days ahead. Of the stories I might see. The photos of tortured faces and skeletal bodies. The swapping of confessional histories, tallies of hospitalisations and physical complications. Then ultimately the lip biting and need to stifle judgement it all may personally lead to because I really don’t want to upset anyone. It’s all so precarious.

I am very much aware of eating disorders. Too aware. Painfully aware. I wish I wasn’t.

I find the whole EDAW thing completely draining and part of me wants to burrow away into a tight ball and hibernate till it’s over.

One of the most difficult things is the barrage of confessional life stories that we will hear - I’ve already seen many cropping up on various social media platforms. I don’t mean to criticise individuals posting this confessional stuff  - I really do recognise that intentions are good, but there’s a distinct gap in understanding and sense of consequence there. A lack of care over the content they are presenting to what may be a particularly vulnerable audience.

We all say it eating disorders aren’t about weight. But the anorexic voice can be almost laughably predictable in obsessing when it comes to our own weight. Personally, I avoid pushing inspirational advice to anyone else, because I know the way I look and evident behaviours can make it sound false and patronising. But others don’t seem to see the problem in doing this. Yes, it’s okay to talk about your struggles, your successes, and nobody should have to hide away from a camera capturing real life moments - being ill is nothing to be ashamed of. But I can’t help but think people should think twice before posting objections to flawed media coverage and damaging advertising when their posts made contradict their arguments. Preaching about fighting stigma and how eating disorders are not about weight on Facebook rings hollow at best when accompanied by emaciated photos. If it’s not about weight then nobody needs to see them.

Certainly, if looking back at those painful reminders helps someone personally to feel motivated and want to continue in getting better, that is great, but surely it can be done without exposing it to a public space with the potential of causing others harm? I do completely empathise with that nagging need for validation, but putting that responsibility onto others is unfair, especially if they have eating disorders themselves.

It feels like standing in an echo chamber when coverage starts to crop up on your social media feed. Voices bounce back and forth against the walls, each one trying to increase the volume of pitch, be louder than the rest. Yet the people that really need to listen and take notice are outside in the open air and completely oblivious.

EDAW is supposedly about raising awareness and educating people. But I just don’t think this kind of approach will ever educate anyone much at all.  The media regularly sensationalises their lifestyle articles with low weight photos for shock tactics. It’s not really that startling anymore, and whether partially aware or not, the fact is that these posts really have the potential to affect followers in adverse ways.

The cherry on the cake this year is that the focus had been set by B-eat as ‘early intervention’. Don’t get me wrong, early intervention is hugely important and a worthwhile topic that needs acknowledgement, but to me, right now, it feels like another huge slap of rejection and dismissal - invalidation even. See, early intervention has ALWAYS been important, but it’s only in recent years become cast into the spotlight for attention, yet what about those of us who didn’t get the early intervention we needed - WE needed it too – we didn’t get it then, and we need support now. [Another blog to come on this later in the week.]

I feel like what those of us that regard ourselves as advocates need to be working towards is challenging misconceptions out there. Because although eating disorders are being talked about more and more, it’s too often couched in ignorance and misinformation.

This is particularly relevant in regards to ED-DMT1 or diabulimia, which is only just becoming more talked about. Despite the success of more widespread coverage over the years there have been a lot of mixed messages about what diabulimia is and how it is distinct from ‘ED-DMT1’. DWED aims to put up definitions and resources relating to this as part of our new ‘about us’ page soon. We feel we have achieved our first goal which was to just get more people to hear the term ‘diabulimia’ and begin to talk about it.

Awareness – about eating disorders in general and diabulimia specifically - can be raised without implicit competitiveness. Without showing photos and offering stats in an attempt and prove our right to a voice. We all have that right. Words are more meaningful, and all of us offering any commentary during NEDAW need to stop and think for a second before we press the send button: it can be too easy for the eating disordered mindset to sneak in despite our best intentions. Let’s be real and let our stories stand alone and challenge each other if needs be. The fight is not over, but often we can be shouting so much that we fail to realise the hardest fight begins closer to home.

 

By Claire Kearns.