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.

Exciting Innovations in the World of Diabetes Technology

Research and scientific discovery is constantly evolving in relation to diabetes, including exciting technological innovations. Through recent years the use of insulin pumps and continuous glucose monitors has become more and more common, with a range of different models now readily available. Future advancements are coming, with hope relying heavily on news of the artificial pancreas, which may really change the landscape of diabetes care beyond recognition. Gone are the days of large bulky blood testing machines and insulin drawn from little glass bottles by one use needles.

An insulin pump is a device that is worn on a type-1-diabetic patient’s body. Suppliers of insulin pumps in the UK are Medtronic, Dexcom, Abbot and Animas. A pump provides a constant trickle of insulin through a cannula which is inserted under the skin and can receive blood glucose results from a linked meter via a Bluetooth sensor. In reaction it then automatically calculates the amount of insulin units needed to correct a high reading if requires, or to cover the amount of carbohydrate in a snack or meal. Pump settings can be adjusted to personal rates of insulin sensitivity and target ranges as well as be used to track progress and patterns in blood sugar control.

An insulin pump can also be linked to a Continuous Glucose Monitor (CGM). This is a small sensor which is placed on the skin and used to track blood glucose at regular intervals. A CGM can work alongside an insulin pump to predict and provide the means for a type 1 diabetic to administer the appropriate insulin doses required. The most innovative product on the market at the moment would appear to be the FreeStyle Libre if hype and demand is anything to go by. Comparing the Libre to a CGM, the charity INPUT explains “Both measure the glucose in interstitial fluid but Libre could be better described as CGR – continuous glucose recording – with the ability to read that record each time the sensor is ‘flashed’. It does not transmit, and cannot notify the user of adverse events as they happen.” At present however, a Freestyle LIbre cannot be funded on the NHS and the initial outlay as well as pay out for sensors can become costly.

Neither a pump nor CGM take away the need for someone with type 1 diabetes to be proactive and in charge of their own medical needs. Both devices can make living with diabetes more manageable but they are certainly no easy cure and can also be very difficult to get to grips with. Some type 1 diabetics have described the process as close to the experience of diagnosis all over again, and having to learn from the beginning.

Currently, NHS funding and availability for these types of technologies is unfortunately regionally dependent. This failure was addressed in the All-Parliamentary-Group’s recent report Levelling Up: Tackling Regional Variations in Diabetes Care which explored ways in which such post-code lotteries can be dissolved. Additionally, recently published NICE guidelines for children and young people as well as their recommendations for adult indicate the crucial need for type 1 diabetics to have access to such technology to adequately treat their condition.

INPUT are a UK based organisation with a 'mission to support people in accessing diabetes technology.' On the work they do, Chief Advisor Melissa Holloway, explains:

“Many people who contact us are interested in a pump or continuous glucose monitoring, or Libre, and want to talk about what might suit their needs best. Some people have been told they aren't suitable for a pump and they want to go back to their team with some further points for discussion. Others have been recommended a pump and want to hear from people with first-hand experience.”

For someone suffering from ED-DMT1 or Diabulimia a pump or CGM may be beneficial, but the process needs to be carefully considered and comes with a high degree of risk. A comprehensive breakdown of the possible advantages and disadvantages that should be acknowledged in evaluating such a situation can be found in our members' section as part of January’s premium content. We also provide examples from two individuals that had differing good and bad experiences of using a pump while also managing an eating disorder.

On the important considerations required to determine pump and CGM suitability for someone with ED-DMT1, Melissa from INPUT said: "There are cases where a pump has helped someone with diabulimia, but there are also cases where someone has disconnected their pump and purposely missed insulin to lose weight.

"If someone isn't checking their glucose level to begin with, could they get into a medical crisis from not calibrating a CGM?" A CGM can't help someone keep better control if they turn off the high alarms; would someone who is prone to under-dosing actually find it more stressful to have constant data? Can Libre lead to better outcomes even when someone isn't regularly bolusing for meals? This is an area where there are lots of individual variables and unanswered research questions.”
 

 

Seeds can grow

Seeds can grow and flourish.

I refuse to be a fucking shrub, alright?! (Subtle nod to the film Girl, Interrupted. Had to.)

SEED stands for ‘severe and enduring eating disorder. I only actually heard them refer to me as such in the past year or so, and was taken aback to have it used so candidly. By ‘them’ I mean my current eating disorder service providers.

A SEED patient is classed as someone with an eating disorder that has lasted beyond 7 years. Why 7 exactly I do not know, but that’s the line they draw. It feels like a line between worthy and not worthy of help. Like you suddenly fall through cracks into shadows, case aside, hopeless.

I understand that it is a way of being realistic about future expectations, of making it okay to only aim for stability. I agree that someone with a long history of disordered eating should be regarded differently to someone with say a year of anorexic or bulimic behaviours, and expecting big changes is too much. But I don’t think anyone should ever be labelled as unable to ever achieve recovery. It’s disheartening. It’s an opinion that colludes quite easily with the thoughts inside your head that tell you that you are worthless and good for nothing.

But boxes are for objects, not people. Language and attitude is key, because it’s not just that word ‘SEED’, but the way I have been made to feel. Disregarded. Left on a dusty shelf with rag dolls and unwanted stuffed animals.

12 weeks of CBT just last year was of help to me. I managed to make behavioural changes and start to tackle my negative thinking patterns. Yet because my weight chart didn’t show a steady line upwards from week to week they concluded it unsuccessful. My GP stressed that more therapy would be beneficial but they just refused to offer anything further. Now I just see a nurse every few weeks and it seems the only objective is to weigh me (a trigger every time as I try to stay away from scales these days) and make sure I am still alive. I actually last had an appointment around 2 months ago as have been waiting for a new appointment in the post, so really that shows how much I am of concern.

Of course I also see that early intervention is being implemented a lot more than it was in the past. This is a really good thing, and indeed best use of the light NHS money pot. It just means that for those of us that are of the old ‘system’, with the approach whereby not much help would be available until you reached an acute stage of crisis, when suddenly it would be all sirens flashing, it’s tough. We drew the short straws, pretty much. It stings.

Today I have seen how the approach can be different, though, it can be better. I attended my first session at Kings College Hospital which now has a specialist team that treats diabetics with psychological struggles, particularly eating disorders. My GP made the referral and I was so relieved that it passed by the commissioners without any trouble. I have come away from this appointment with renewed hope.

Therapy was very much on the agenda. Some med changes. Most of all, understanding. No weighing, just listening.

We need more places like Kings, desperately. An eating disorder alongside diabetes must be tackled differently from more typical eating disorders. Losing trust in clinicians is inevitable when they continuously get the facts about your chronic condition completely wrong. Some of the things doctors have told me about type 1 diabetes are just laughable. Of course, we know this illness inside and out, we are the experts, more so than some psychologist or psychiatrist that did a few modules on diabetes in medical school.

We must keep on pushing for more specialist pathways like that at Kings, more open doors that are widespread. Nobody should have to feel beyond hope and that they do not have the support to try and make changes. Small changes are so important.

An eating disorder is not living it is simply existing. Just like a seed, contained, without water it will remain as it is. But just a little sprinkling of rain can be all it needs to begin emerging and uncurling itself with green stalks and sometimes, eventually, rosebuds. Let’s see.

By Claire Kearns.

Trying to be normal in an abnormal world

Most people experience some kind of anti-climax after the turn of the New Year. After all the wrapping paper has been cleared away along with the party streamers, it’s back to work or study, bills and the shuffle of everyday life. For those grappling with eating disorders, it can bring a sense of huge relief that a very stressful period is over with for another year.

But then comes the onslaught, my personal most-loathed part of January: the sudden excessive emphasis on diet, fitness and “getting rid of those extra Christmas pounds!”

On most days it can be difficult trying to navigate through a twisted tunnel of mixed messages when you suffer from an eating disorder, with or even without the complicated addition of type 1 diabetes. You are told by your doctors and by the part of you that wants to be healthy that you need to eat. You need to take insulin. To get better you need to refuel, replenish and relax.  But the environment around you, especially during January, suggests the opposite.

Media and society can easily push you back into a disordered mindset you are trying to escape from. It’s tough, pushing back and in particular rejecting the ideas that come from voices around you. It can seem like everyone is talking about going on some kind of diet, joking about how much they eat over Christmas. Even friends who don’t mean to trigger are suddenly opting for skinny lattes whereas in December they’d have ordered a hot chocolate with cream. Comments overheard all around “oh I have to get back on the treadmill!” “I need to get back into my old clothes!”

You have to try to keep reminding yourself that to recover you need to regain additional strength. Reserves are low, and whether underweight or not someone that has been restricting food or insulin will have a starved mind and depleted body. Low fat or calorie controlled might be unnecessary for someone of a normal weight without an eating disorder, but for someone with one this can be harmful without that stable level to begin from. Additionally, for someone with type 1 diabetes many of the eating plans that are promoted can be completely impractical.

An important message to note is that it has been proved that New Year’s resolutions rarely stick. Many individuals will give up on new fitness plans a few weeks in and may lose a few pounds but then gain a couple back. It is often a short-lived phase yet for someone with an eating disorder it can be a deep rooted obsession. It can kill us.

I just try to keep my head down; sometimes it is all you can do. Divert my eyes from the screaming front pages of trashy magazines and stupid television adverts. Remind myself that certain sources of media are only interested in making money and don’t care about potentially harmful messages they might be construing.

Repeat if necessary: I don’t need a new television package, sofa, dining room table set or to sponsor a child in Africa. I do not need to try out the 5:2 plan, join the gym or abandon eating completely for shakes or juicing.

I wish all of you that are struggling out there and reading this a happy and safe 2017. Please, try to be kind to yourselves.

 

By Claire Kearns.

DWED 2016 Holiday Card Exchange

This year DWED is again running a holiday card exchange. This is open to anyone from the UK* that is currently struggling with type 1 diabetes and an eating disorder or has done so in the past.

If you'd like to spread a little Christmas cheer and put a smile on someone's face while perhaps offering some words of comfort then please do sign up! In turn, you shall receive a card of your own.  You may wish to include your favourite quote or piece of advice for surviving the holiday season, and cards can be anything you like, from handmade to shop bought, no great expense required. 

The only condition is that if you do agree to take part and then later need to drop out you inform us asap (claire@dwed.org.uk) so we can arrange a different pairing for your intended recipient. We understand completely that issues may arise, especially when precarious health is concerned, but we ask this so that hopefully nobody will lose out.

The deadline for signing up is just 5 days away, 10th December,* and we ask that cards be posted as soon as possible, keeping in mind that the last posting date for 1st class in the UK is the 22nd December. You should receive a confirmation with the details of who you need to send your card out to soon after the 10th.*

10/12/16: Extending sign up deadline by 2 days till 12th December. 

*11/12/16: We are joining forces with US charity the Diabulimia Helpline to widen the scope of our holiday exchange. This means you MAY be given the address of a recipient based internationally. If you'd specifically prefer to only post a card within the UK then this is perfectly fine and can be arranged, just let us know at claire@dwed.org.uk. 

12/12/16: Sign up for the card exchange is now closed. Those that have responded will in due course receive the name and address of the person they should send their card to. Thank you all and happy holidays!