Eating Disorders and Diabetes – A multiplication problem

I have diabetes. This is not a secret. I also have an eating disorder (ED) – I’m told I come under the category of ‘severe and possibly chronic’ Anorexia Nervosa – this is also reasonably well known among my close friends and family. What a lot of them don’t know – I’ve kept it from many people to avoid them worrying – is that these 2 things in combination are DEADLY. My psychiatrist told me in no uncertain terms 18months ago that if I didn’t get these 2 things under control I ‘won’t make old bones’. He is a colleague of my mother’s so that was a difficult thing for him to tell me but he was VERY serious.

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Young women – especially between the ages of 15 and 30 – are twice as likely to develop an eating disorder if they also have type 1 diabetes. There are a number of reasons for this. In a normal, healthy body that can regulate it’s own insulin production eating a diet high in simple carbohydrates can result in ‘excess’ body fat storage. This is because higher levels of insulin in the bloodstream encourages the body to store unneeded calories as fat for later use. As explained in my last post, when the body cannot produce insulin, it moves from using sugars for energy to breaking down fat stores (if there are any available). Before being diagnosed (especially since Type 1 diabetes most often manifests in adolescence) many young women will be happy with the unexpected weight loss they have experienced. They have more than likely been praised for this weight loss or had others communicate their envy, saying things like “You’re so lucky! I wish i could lose some weight. You look amazing!” They have probably been shown more ‘gratifying’ attention by men and/or women. After diagnosis, synthetic insulin encourages body fat storage to an even greater extent than natural insulin. Most of those diagnosed with Type 1 will experience weight gain very quickly after starting their correct medication.In our society this can contribute to poor self esteem and self image – it can also make a person feel out of control (which, as discussed previously, is almost the worst feeling possible for someone inclined towards disordered eating). Since many who suffer from disordered eating have experienced some form sexual abuse/assault this sudden weight gain can make them feel either unattractive or overly exposed.  All of these issues contribute to a number of full blown eating disorders but the one i want to concentrate on now is more serious and more deadly than any of them.

Starving, overeating and binge/purge cycle ED are all absolutely awful and very serious in the medium – long term. They all have far reaching consequences and they can all result in premature death. I am definitely not downplaying any of them. When you mix an ED with diabetes, however, you get something new. Something that the Medical community are only just starting to realise the seriousness of. This ED is what some are calling ‘Diarexia’ or ‘Diabulimia'(terrible names but that’s what they’ve gone with!).  Surveys have shown that around 80% of women with Type 1 (including those not actually diagnosed as having an ED) have, at some point, reduced the amount of insulin they take to dangerous levels in order to lose weight. For some, this is a short term ‘solution’ for losing weight for a specific event – a wedding or another special occasion – and is corrected quickly. Most people will stop after a short time because a BSL over 15 (this is the level deemed ‘dangerous’ and when the body starts burning fat) means some not fun symptoms have to be dealt with. These include dehydration, lack of energy, stomach pains, headaches, lack of concentration,  nerve pain and blurred vision. For someone with an ED this is NOT a deterrent – in fact often this ‘suffering’ gives them a sense of accomplishment. Those with EDs hate their bodies and want a sense of control over it. Punishing the body they hate makes them feel good. As an added bonus, not taking medication means you don’t have to think about being chronically ill all the time.

An ED can shorten Life Expectancy by 10-20 years – when you add terribly controlled Diabetes to the mix, you can take off another 10.  Badly controlled diabetes can lead to blindness, major nerve damage, osteoporosis, depression, Diabetic Ketoacidosis, and death. Those are not the long term consequences either – there are no such thing as long term consequences for someone with this disorder that doesn’t recover reasonably quickly. Diabetics also have to revolve their lives around food and continue to count carbohydrates in order to get healthy – this makes recovering from an ED even harder as there will NEVER be a time  when food is not a major focus. My ED means i think about food almost constantly and diabetes means that this will continue for the rest of my life.

This particular ED is so insidious because it can be hidden for much longer than Anorexia or Bulimia.  I know i hid it for a long time even from myself. Right now my struggle is with the image i see in the mirror. I have spent the last month REALLY pushing myself to put on some weight – I’ve even been drinking the gross Diasip drinks the Dr prescribed me. I have succeeded. I’m not going to say my weight on here – I dont think that’s helpful – but everyone seems happy with how much I’ve gained except me. Even though i realise i’m still ‘underweight’ all i can see in the mirror is fat. And it FREAKS ME OUT. My brain is used to seeing Me a certain way – being ‘thin’ has become part of my identity. I’m paranoid that people are talking about me behind my back or that they’ll think I lack self control. This is obviously a projection of my own thoughts but it feels very real. I find myself looking at ‘thin’ people and thinking “Why do they get to stay thin? No one’s making them gain weight! Why should I have to?” It’s so tempting to think “I’ll just skip a little bit of insulin – just until I look like X. Then i’ll take it again and just eat better” – SCARY! I don’t want shredded organs or for my brain to be permanently damaged. I don’t want to die. Unfortunately it’s also human nature to think that it’s never going to happen to you. “I’m different – I’m not as bad as <insert name here>. It’ll never be that bad.” – I often think these things despite having been hospitalised a number of times with Diabetic Ketoacidosis. People have been telling me how much better i look at this weight – even when i thank them I’m still thinking “No, I look fat.”  This is a scary mental illness.REALLY scary. I have 4 sessions left at the Eating Disorders Unit – not a huge amount of time left to sort my brain out. God knows what I’ll do once they discharge me.

Diabetes – a chronic illness

So, diabetes. It’s not so bad right? I mean, it doesn’t sound that fun – sugar is so delicious! – but they have medication for it now don’t they? A couple of little injections a day – no big deal! Except, unfortunately it is a big deal.

MMM Candy!
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Diabetes is a life threatening illness. That isn’t to say that people with Diabetes can’t live useful, happy and fulfilling lives – they definitely can and do. This is true of many chronic illnesses. The reality is, though, that dealing with Diabetes significantly impacts many people’s health, lifestyle and even their Life Expectancy. Although improving with the synthesis of new types of insulin and better nutrition guidelines, those diagnosed with Type 1 diabetes this year will still live, on average, 10-20 years less than their peers who are not diabetic. This is because sugar – the simplest form of carbohydrate and the substance our bodies love to use for energy – can be worse than poison in high concentrations in the human blood stream.

Blood is our bodies delivery system – it carries nutrients and simple sugars (among other things) to our cells that allow them to function. When the concentration of sugar in the blood becomes too high (this only happens when our cells cannot metabolise sugar due to a deficit of insulin) the sugar does can do as much damage as ground glass would. Organs are shredded from the inside, blood vessels are damaged or blocked, nerves become painful/oversensitive or virtually dead. Without insulin, sugar can’t be converted to energy and fat stores and muscles are broken down instead. This breakdown creates ketones which, in high concentrations, lower blood pH levels – basically this means that a person’s blood becomes too acidic. Believe me when i tell you that this process is REALLY PAINFUL and a medical emergency. Acidic blood is not conducive to continued life as I’m sure you can imagine. Type 2 Diabetes works slightly differently in that the body can still create insulin but the receptors that pick it up have become desensitised to it – the effect, however, can be the same. This is a simplified explanation of a very serious condition. Diabetes used to be a death sentence – thanks to the invention of synthetic insulin it no longer has to be.

The Ready Shot
by T. Darrell Sullivan Photography
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Diet is still very important – low carbohydrate, high protein diets are recommended for most Diabetics for the best possible health outcome. Carbohydrate counting, planning days around food and eating, constant checking of Blood Sugar Levels (BSL), multiple daily injections, limitations on employment possibilities and energy levels – all definite (not just possible) results of being Diabetic. And those are just the issues involved with well controlled Diabetes.

Personally, Diabetes has had a huge impact not just on my physical health but on my mental health as well. As stated in my last post I like to feel in control. Chronic illness takes control away. For me this has often meant i often don’t take care of my diabetes the way that i should – constant checking of BSL and injections remind me that I’m sick so there are times when I just don’t do it. This is an issue for many with diabetes, especially since Type 1 usually manifests in adolescence  – the time when most people are searching for control of their lives and hate being ‘different’ from their peers.  My depression and anxiety are both exacerbated when I think too much about the impact my poor health has had on my life – especially since there is NO CURE for diabetes. Even if i spent all my time and energy looking after my health the reality for me is that my health will never be amazing, it will be difficult (if not basically impossible) for me to have more children, I will always have to focus on food and i will, in all probability, die early. These are the realities for so many people who live with chronic illness, not just those with diabetes. I feel for anyone with an ‘invisible’ illness, whether physical or mental. Sometimes it’s extra hard for those who appear ‘well’ to those around them – even when the issues are intermittent or not life long. So many of us want to help others but feel like a ‘burden’ when we seek help. I have used Diabetes as an example from my personal experience but their are many people i know in the same boat, even if their particular illness is different.

I haven’t grieved for my health or the life i could have had without illness. My Eating Disorder will be much harder to overcome because food will always need to be among my most important plans. I need help to grieve. Grieving feels to me like a loss of control (that thing again!) but it’s something that i need to do to move forward. This blog is part of that.

Ash and Cookie

The rest will be some intense counselling and CBT – and a little leaning on my awesome friends and family. I think I’m getting a little better at asking for help when i need it. Or at least acknowledging that I can’t do everything myself. It’s sometimes seems impossible but I’m going to keep trying for my wonderful little girl.

Chronic Illness effects both mental and physical health in a very significant way – and the effect on Eating Disorders, especially when the chronic illness involves significant diet/weight changes, can be especially profound. Next up – the worrying and little known/talked about links between diabetes and the development of Eating Disorders.

What do you think?

 

• Do you believe mental illness is a serious disease, much like any other, that requires treatment to recover from?
• If a friend or family member told you they had mental illness how would you respond?
• What would you do if you heard someone else discussing a person with a mental illness?
• Do you believe that this person must be stupid or ‘ridiculous’ for not recognising and seeking treatment for their mental illness?
• Would you ever say to someone with a true phobia that they should “get over it” and interact normally with something they are deathly afraid of?
• Would you blame someone for their distorted thinking patterns?
• Do you believe that the mental illness which has the highest rate of death, should be well-funded by government and well understood by Psychiatric professionals?
• Would your answers to any of these questions change if I told you that the mental illness was an Eating Disorder? What about a specific one? Do you have more sympathy for a person with Anorexia/Bulimia or for someone suffering from severe overeating?

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Eating disorders are still one of the most misunderstood mental illnesses a person can suffer from – they are also the most deadly. Death rates among those with a severe Eating Disorder are as high as 25%. Statistics also show that those with Eating disorders have twice the rate of co-morbitity (suffering from a concurrent mental illness such as depression, severe anxiety and intense phobias ) than those with other mental illnesses. The consequences of even recovering from such a disorder can still be pretty dire with a relapse rate, after 5 years of treatment, of about 30%. Higher if treatment is not continued for at least this period. Infertility, severe osteoporosis, heart, lung and muscle wasting, nerve damage – the list continues. A person who develops Anorexia at 15 and is ‘cured’ can still reduce their Life Expectancy by 15 years. Twice that if they have another chronic illness. It has been documented that up to 90% of people who over or under eat have endured sexual abuse or assault. This means that self-esteem/self-image and trust in treatment/professionals/people is VERY low among sufferers making it difficult for them to seek help and contributes to the high rate of relapse and suicide.

I asked the questions above (and gave you some scary information) because, unfortunately, many people still believe that an Eating Disorder is about food. Or about vanity. Or (in the case of severe Overeating) a lack of willpower. Until I was diagnosed I know i sometimes thought the same thing. Why would someone want to be so thin? Don’t they know its bad for them? Why would people eat so much/little they could die? Surely being thin – especially so unattractively thin – isn’t worth dying for? Surely junk food isn’t worth dying for either? I’m embarrassed that i thought this way. It’s a very judgmental way to think. It was also judgment based on misinformation. I didn’t know anyone with Anorexia/Bulimia and i based my assumptions on the poor information, and societal pressures, i was surrounded by.

From experience and research i now know that Eating Disorders are not about food at all. They start off being about control. No matter what is happening in your life as an adult (and as a child in many ways) you have the ability to control what you eat. This is the same whether a person restricts their eating or eats more than is good for them – they still get to choose. Until they can’t anymore. Overeating works like any other addiction – at first a behaviour (or drug use) is chosen and controllable. Then it starts to control you. It gradually becomes the only coping mechanism you can remember how to use – the only way you know how to suppress disturbing emotions or to endure difficult life events. Under eating has a further complication – the more you starve your body of food, the more obsessed with food it becomes. Your brain is unable to function in a healthy manner AT ALL – its perceptions, and therefore it’s reality, is completely changed. People like me don’t see what we really look like when we look in the mirror. Our brains focus on perceived ‘faults’ until they’re all we can see.   Food, eating and weight gain all become real phobias – any ounce of fat becomes a ‘failure’ and a failure doesn’t deserve the ‘indulgence’ of eating! This sounds ridiculous – that any person could possibly think in such an unreasonable way seems hard to believe. This is where remembering that this is a very ill brain – one that is not functioning in a ‘normal’ manner – comes in. I hope that we are educated enough about depression now that most people wouldn’t think to tell someone suffering from it to just ‘cheer up’ – in the same way it is not helpful to tell someone with Anorexia/Bulimia to ‘just eat a sandwich.’ (which is literally what some people have said to me) or for someone with a food addiction to ‘just stop eating so much!’

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The hardest part about treating an Eating Disorder, once treatment is sought, is that it cannot be ‘fixed’ until your brain can function. That means, rather than having treatment so you can eat food in a more healthy way, a person with Anorexia or Bulimia must start to eat properly before treatment can be effective. Imagine you were deathly afraid of rats – you could just avoid them right? If food and gaining even a small amount of weight is what makes you afraid, what do you do then? Unfortunately, in-patient treatment that is often required (with restrictions on exercise and using the bathroom as well as forced feeding and daily weight checks) simply adds to the sense of ‘failure’ and loss of control a sufferer feels and can actually delay long term recovery. What about when your addiction is food? You don’t even have the option of TRYING to avoid it – it’s hard enough to overcome an addiction to a substance you don’t physically need to live. When your addiction in food it’s next to impossible.

This is my 2nd round with the terribly underfunded but amazingly kind Eating Disorders unit in Christchurch. They are miracle workers. And I’m telling you that even with their help I would be dead if it wasn’t for my daughter. Or very close to it. I sought treatment for her sake when i couldn’t for mine and I am pushing myself to eat and gain weight and get better for her. I want to be around to see her grow up and live her life and i would be devastated if my relationship with food was passed onto her. So far I have been very lucky but i need my brain to not be crazy – Ashlee deserves a healthy mother whether i believe I deserve to be healthy or not.

My beautiful Ashlee

I’m embarrassed to admit my disordered eating habits and unhealthy thought patterns – there is still huge stigma attached to Eating Disorders and when I’m ‘well’ I know how crazy my thoughts would sound to another person. I need to tell people though. For my own sake and to hopefully help people recognise this terrible illness is serious and should be treated accordingly. Stay tuned ❤