Early Intervention - NEDAW musings

Today is officially the last day of Eating Disorder Awareness Week. Before it passes over I feel the need to talk about the focus for 2017 as set by B-eat which is Early Intervention.

The topic is a difficult one for me, most of all because any focus on early intervention felt very lacking all those years ago when I became ill. It was more of case of waiting for sufferers of eating disorders to reach a point of acute danger before offering any substantial help, sometimes pushing so far that there was no in between from being given no care to then suddenly passing a line whereby you are an emergency  case. Weight was always the quantifier, and so often it felt like you had to lose more in order to get any kind of recognition or treatment. Messed up is having to push yourself to get worse just so you can get better.

This is still happening. But I have also noticed progress, with some being taken seriously at an early stage, where the outcome of recovery is more likely. The sooner the better, as more quality of life can be preserved. Unfortunately despite the change of direction funds are still being squeezed, with the NHS budget out of breath and gasping. Mental health beds are continuing to be cut, and so it’s still a struggle for many treatment facilities to take anyone beyond those at great medical risk. It’s further down that some head-way can be made I feel, using outpatient and day patient resources to stop further admissions down the line if at all possible.

I can’t stress how much those with diabetes and eating disorders need early intervention. The danger that someone omitting insulin can be in despite presenting as a normal weight is immediately life threatening. This HAS to be recognised. So often I hear that anorexia has the highest mortality rate out of any psychiatric condition, yet I’d take a wager that ED-DMT1, particularly involving insulin omission would overtake if it had an official diagnosis and the appropriate studies and statistics were available.

The need for early intervention AND timely recognition of ‘diabulimia’ symptoms alongside understanding of its seriousness must go hand in hand. Recently updated NICE guidelines are definitely a step towards that as type 1 diabetics are now listed as in need of urgent attention under eating disorder care guidelines.  If untreated the long term complications of ED-DMT1 can be so devastating, I won’t list them as we all know, the end of the line being loss of sight of limbs.

I do wonder where I might be now if I’d had help earlier. It’s hard not to dwell on that somewhat, 15 or so years down the line. I am definitely not the only one either. 

They have two patients with type 1 diabetes in the day-patient program I attended 3 years back now. They are getting trained up on the right way to deal with them, the NICE guidelines nipping at ankles with the worry they could get into trouble. This is the same unit that would hear nothing about that kind of specialist input while I was there. They told me they did not need training, and I felt like they were collectively sighing whenever I spoke of diabetes. I came out of that program far worse than when I went in. So yeah, that’s difficult to swallow. 

But I’m trying to let it go. 

Looking at younger people that are so vulnerable these days makes my heart sink. Even more so those I spot dabbling in eating disorder behaviours. I want to shake them or hug them and tell them to stop, but of course that would sound completely patronising and it’s not my place. I worry about the increasing coverage of diabulimia in the news being used as the catalyst for ‘ah maybe I will try that?’ thinking, but that’s the underside of creating awareness. Sensationalist reporting that focuses on weight and pounds lost certainly have a lot to answer for there, EDAW has once again shown that the media will never learn.

The emphasis needs to be on saving those years, months, hours that can be eaten away by an eating disorder. Of the lives that have been lost because help has come too late. 

Early intervention. To those who can act, make it mean something, please.

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.

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.