Tuesday, 24 December 2013


Dear Anna,

I found some photos of you today.  Your mother showed them to me after she rediscovered the scrapbooks she lovingly created of family life as you and your brothers were growing up.  As I flicked through the cataloged memories I came across a few of you. You don't know me, but one day - in say, 27 years or so - our paths will cross. Our journeys are intertwined my friend, and I have some things I wanted to say to you.  

You are three-and-a-half in this photo and what you lack in arms you more than make up for in undeniable sweetness. You are cute as a button and starting to learn it.  You are knee-high to a grass-hopper and so very 'new' in comparison to the world you live in. Your wisps of golden brown hair are still delicate enough to be highlighted under the glow of the Summer sun.  You are learning to pose for the camera and are sporting your own version of the Baywatch bikini.  You are working it, kiddo.  

You are healthy, happy and care-free - as every little girl should be.

It is Christmas Eve 1986 in Germany now, and you are four years old.  You have inexplicable taste in clothing colour-schemes and your parents have clearly favoured the beginnings of a mullet as your hairstyle of the moment.  I'm sorry, I'm not here to help you with this but to deliver the message that it will make a fantastic conversation piece in a place called 'the Pub', a few years down the line.  You're friends will love it. 

It is a special night because tomorrow is Christmas morning; the morning every child lives for.  But you are also tired.  It is an alien tiredness - one that doesn't come from playing too long or running too far.  It consumes you. 

For you, this night will change the course of your life forever. Because tonight, in just a few hours time, you will be taken to hospital, somewhat aptly named 'the ill house' in German, where you will be diagnosed with type 1 diabetes.  

I am sorry.  A million times, I am sorry.  Your parents had already been told this was a possibility at the start of the week but were sent home to play the waiting game. They don't yet know what this truly means but they won't have to wait any longer. Tonight, on Wednedsay, December 24th, 1986, diabetes arrived.

I wish I could make you understand that it's not your fault - you didn't do anything wrong.  And I am not here to take it away - I wish I could.  But that too would change the course of your life.  It would take you away from what you will become, which -  red bikini, mullet and all - is something you can be proud of.  What I can do is give you a 'heads up' from somewhere down the line.  I can make a you a promise; that everything will be OK. 

The man helping you light that candle is your father.  He and your mother will do battle with diabetes, armed only with insulin, syringes and urine testing strips to keep you safe, with a conviction only they and other parents can possibly understand.  They rule your diabetes with an iron fist and walk the perilously narrow tightrope between 'too low' and 'freaking high!' on an hourly basis, because have been warned of what can happen to you if they don't.  The threats they have been given are too much for you to bear so for now, they carry that burden alone. They will make it a big enough part of your life that you take it seriously, and a small enough part that it doesn't become something that defines you.  Quite rightly, you have no idea how hard they work to keep you care-free. Your mother will continue to embrace you, console you, encourage you and challenge you to do the best that you can in your diabetes care, forever.  Even when you have moved away and turned your back on the home she once made for you, she will offer you her warmth to help cradle you from the hurt diabetes can cause.  Never stop saying 'Thank you', even though she doesn't ask.

You are eight, and you have now lived as many years with diabetes as you did without it.  You no longer live in Germany, having moved 'home' to England at age 7.  You have started school and now holiday with your father in Germany in the Summers, choosing to spend most of your time with your friend, Davina.  You have known her since you were both six months old, your birthdays only a matter of days apart. You have also developed a nasty habit of faking hypos in front of Davina, because the attention she gives you makes you feel special.  Davina is courageous, bright and ever-devoted to you. When she sees you go hypo she wraps her arms around you, flags down strangers for help and runs to get your brothers.  You can still recall her being at the end of the table in Kindergarten when the medic had to treat you.  That hypo was very real, very frightening and she was there - I can remember her hand on your foot. Be warned that your hypos  - the real ones - also frighten her. You will grow to be ashamed of this and the first time you have the courage to admit it to anyone, will be in a blog post on the anniversary of your diagnosis.  But I forgive you, Anna.  I know that you are confused, immature and in many ways, still hurting.  I also know that this friendship will endure.  To this day she remains your friend.  You still write her letters (although they are called 'emails' these days) and every time you see her she welcomes you with her kind, warm arms. Be grateful for her.

You are 11 now and making your way up to secondary school.  Over the next few years you will begin to take control of your diabetes yourself; administering insulin, doing blood tests and taking hypo treatments.  You have stopped faking hypos.  But in this part of your journey you will begin your troubled relationship with food - one which will stay with you until a time I have not yet seen.  The tight ship that your parents sailed when you were a child means that you have escaped all complications and appear to be carrying that on.  But you now have a focus on food that secretly hides compulsion and anger.  You will feel the darkness of depression. You will hate yourself at times because you use others as your yardstick.  

This. Will.  Not. Do.

Your weight will swing, as will your focus on health.  You will lose weight in your teens by over-exercising and under-eating, and you will dabble briefly with slimming pills.  But in your late 20s you will turn a corner.  You will learn how to exercise safely with diabetes and you will begin to understand just how and why your battle with weight is so much more complex than someone without your condition. Eventually, you will stand in front of 70 people and tell them about your journey.  In this moment, you will feel only pride.

You will also meet a girl at school.  A girl named Lauren.  Your friendship with Lauren, as with Davina, will be one that endures.  You will see highs and lows, share heartache and joy and eventually when you are 31, she will ask you to be in the room as she welcomes her son, your Godson and nephew, into this world.  This will be the most emotional and beautiful moment of your life.  Your journey with diabetes will be softened immeasurably by the patience, understanding and empathy that this girl will show you.  She makes it seem as though she knows exactly how you feel even though that can't be true.  Remember to reciprocate.  

Only real men wear tutus
You are now in your 20s.  More than two decades with diabetes have passed and you have met someone - someone who will become your husband.  Playful and kind, he will learn the mechanics of diabetes faster than you ever did. Within weeks he will understand hypos, carb counting and daily must-do routines that most young couples don't need to concern themselves with.  You will praise him for this, but not enough.  No praise for the burden he also now bears will be enough.  He will see you in hypos that both frighten and enrage him.  "Why does this have to happen to her?"

When you tell him that you are going to start wearing a piece of medical equipment on the body he so loves, piercing it with cannulas and monitors, he takes it in his stride.  He has plans for when you're 80 and he needs you around for them, so he embraces this change with open arms.  He will joke with you that it's his 'girlfriend remote'. This makes you laugh. To this day, he makes you laugh.  

You will have to talk to him about pregnancy and how hard that journey might be.  He goes with you to your pre-pregnancy appointment and holds your hand, because he understands how scared you are.  You will watch the pregnancies of others play out, wondering if you too will share the same wonderful journey of becoming a parent.  That, I can't answer for you yet, but there is no man in the world you would rather try with.  Just so you know, the man in the tutu is not your husband.  It just felt like a good time to tell you that only real men wear tutus; remember that.

You also start a blog.  The day before you start using that bizarre medical device that you probably can't even comprehend yet.  This project becomes your greatest achievement yet (other than actually getting to adulthood.  Well done, by the way). You start it for God-knows-what reason, but it becomes something that connects you with a million voices around the world.  It will become the saving of you.  

As for me?  Well, you and I will never meet, yet already we know one another.  We have shared a journey, yet the person in the photo has yet to walk my path.  We move in the same direction, but will never be in the same place at the same time. Just know this:

It will be OK.  

Monday, 16 December 2013

Type 2 taboo

I've had type 1 diabetes for almost 27 years and by the measure of time alone, I am an expert in it. I have lived each second, minute, hour and day since I was four years old with it. I will proudly posit that I know more than the world's greatest medical experts because when their day in the office is done and they put down their textbooks, journals and award-winning research and head on home, I don't.  I continue to live with it and feel it, each moment.  

That said, I am in the somewhat unique position that as a person who is obese and has struggled immensely with my weight ever since the diabetes diagnosis darkened our door, I have the opportunity to see a glimpse of the world through the eyes of a person with lifestyle-induced type 2.  I know what it's like to be obese;  I have eaten in secret because I worry what people will think of the 'fat girl' in the corner eating a burger; I have hidden myself from my husband's eyes - and touch - because I'm been ashamed of what I've become;  I've opened myself up and confided in you the psychological warfare I go into each day with disordered eating.  

'Stigma' is a word on many a tongue these days.  It is used in a way to suggest those fighting it are spear-heading a new and forward-thinking world.  We are crime-fighters out for a better world. We talk of changing futures, improving lives, turning pages; of poor media reporting and misconceptions; of re-education and using the global community as the step forward.  And yet, all you have to do is tiptoe into many diabetes forums - forums filled with wonderful, open-minded people - to begin to see that stigma is rife in our very own community.  

The language oft-used to talk about type 2s makes me hugely uncomfortable.  Because if I didn't already have type 1, I would most certainly be at risk of type 2.  It is this blame that I find so raw.  As if the guilt society places upon the overweight for not fitting into an acceptable dress size isn't enough, they are forced too to live with the guilt of having 'brought diabetes upon themselves'.  

"I won't have people thinking I brought it on myself".

"I have no sympathy with people who ate themselves into diabetes"

"I didn't deserve this, I didn't do anything to get this."

Of course you didn't.  None of us did.  But can we really sit there and say that someone with T2 as a result of disordered eating 'brought it upon themselves'?  Is it ever that simple?

In exactly the same way that someone without diabetes cannot possibly imagine how it feels to live with it without making wild assumptions, nor can someone without first-hand experience of disordered eating possibly try to imagine how it feels to have deep-seated issues with food.  It is never just a case of fat, lazy slobs eating too much and giving themselves diabetes. To think so, is to be blind to the truth.  People don't sit there and 'give' themselves diabetes; no-one would make that decision.  And if they got it from abusing food, we should be asking the right questions to understand why!

What do they go through every day?  
Why do they eat this way?  
What happened to them?  
Do they have anyone they can talk to?  
Could I help them? 

Only 70% of people with type 2 are overweight.  There are 30% of people 'tarred' with the unhealthy lifestyle brush too, just as people with type 1 are. But the answer is not to distinguish between those who got it from eating too much and those who didn't - the answer is to reach out and ask WHY they live and eat the way they do.

Perhaps I am so focussed on this issue because this week I sat with my dietician and cried as I begged her for help to address my disordered eating.  Perhaps it is because I am tired of seeing people coldly blame people with type 2 for the poor media reporting of diabetes.  Perhaps it is because I understand what it feels like to feel powerless around food.

Either way my feeling is this; people with type 2 diabetes brought on my over-eating or unhealthy lifestyle did not 'bring diabetes on themselves'.  Diabetes is a by-product of a lifestyle they live and no-one has the right to judge, mock, discriminate or wag their finger at anyone with lifestyle-induced type 2, without first walking a mile in their shoes. No-one.

And until we can rule out stigma within our own communities, we can never truly do so to the rest of the world. That journey starts at home. 

What do you think?  How do you feel about the stigma surrounding diabetes?

Thursday, 12 December 2013

World Diabetes Congress 2013: standing up to stigma and starting projects anew.

When I heard that my friend Carrie Hetherington, from Tauranga, New Zealand, was heading to the World Diabetes Congress in Melbourne, I acted sharpish to make sure that she would be the first guest-poster to grace the pages of Insulin Independent.  

Carrie was the first ever person from New Zealand to become a young leader and is known not only for her dedicated campaign to change New Zealand policy of providing only one brand of glucose meter for all, she also recently won the World Diabetes Day essay competition about the future of diabetes in Nigeria. 

Making waves?  You bet.

Carrie kindly put into words what this event, and the sometimes heart-wrenching information she learnt there, mean to her.  Enjoy...

It's very hard to put the experience of a life time into words. How do you express what it feels like to spend 10 days with over 140 people from 73 countries who have diabetes? People your own age, people just like you. Testing, injecting, carb counting, listening, supporting one another, being understood in a way that only other people with diabetes can. Before I left I worried about being the first ever young leader from New Zealand, little did I know I was about to walk away with precious friends, unforgettable memories and a lifelong global family.

I was lucky enough to represent New Zealand at the November 2013 International Diabetes Federation Young Leaders Programme and the World Diabetes Congress in Melbourne, Australia. The first 5 days involved sitting through intense seminars from morning till night, working during lunches and dinners and taking short coffee breaks. We immersed ourselves in diabetes. We should have been exhausted, but we were running on adrenaline and enthusiasm, we absolutely loved every second of our sessions.

In the remaining 5 days we attended our own selected seminars at the World Diabetes Congress. People of all statuses attended lectures together and I found myself chatting to CEOs, the heads of major pharmaceutical companies, even global leading diabetes specialists. These situations would never happen for young leaders outside of the conference, we were all blown away that people of such high regards wanted to learn about our upcoming projects and had seen us walk on the stage during the opening ceremony. Being at the World Congress taught us how to advocate diabetes, how to put our condition on the map, effectively support our own countries and then extend that internationally. We were taught to change the world.

We spent days learning about the incredible research happening at a global level - the artificial pancreas, genetic testing and the latest diabetes management technology. We even had the privilege of hearing from Dr Fran Kaufman, who truly believes there will be a cure in our own lifetime because their trials are getting so close to that final step. However, it was the personal anecdotes that really moved us. Friends we had made during the first few days stood in front of the audience and bravely shared their own experiences. The situations they had faced due to their diabetes left us speechless and emotional. In China you have to fight to be able to get an education because some schools and universities will reject your application if you have diabetes; your partner's parents will likely end a relationship or engagement due to a diagnosis; and some leaders had even been fired from their jobs. In India the same stigma is rife, diabetes will seriously hinder your marriage prospects, education and survival. In other countries it is seen as a spiritual curse and medication is ignored or withheld because removal of the 'curse' is the only solution they see as being necessary. The implications seem endless, and are of course shocking to hear when you live in such a liberal country with support, technology and funding from your government.

Diabetes has the potential to destroy your future in some parts of the world. People live in fear and they hide their diabetes because of the serious impact it will have on their life. How can you create support groups and help people with diabetes when they are unable to reveal their condition in public? How can you save lives in developing countries when there is no money to buy insulin? These are the questions that remained in our minds, the things that need to change.

It is confronting to hear about these global issues when you have the same condition. But it made all the young leaders stronger, more focused and more excited about creating projects to make a positive change. You can imagine that most of the young leaders arrived with the intention of learning how to improve the situation in their own country, and most of us left bursting with extra ideas about changing the rest of the world. Our enthusiasm seemed to excitedly snowball during each day of the conference.

The primary goal behind the Young Leaders Programme is for each attendee to return to their country and successfully implement a project in the next two years, before the Vancouver 2015 conference. This project could be anything from a small support group to a camp, or a large global initiative. So keep your eyes and ears open, because 140 young leaders are about to try and confront world issues, remove stigmas and make the world a better place to live in for people with diabetes. The quote we were left with was by Mahatma Gandi, 'be the change you wish to see in the world'. What can you do to change the world? How can you help people with diabetes in your country?

If you are ambitious, excited and between the ages of 18-30. You could be chosen to represent your country at the Vancouver conference in 2015, and I'll be there talking about my projects too. Please have a look at the IDF website when applications open in 2014 http://youngleaders.idf.org/join and talk to your national member association. Before you apply, see what you can do to help in your region. How can you use your positivity to make a difference?

Young Leaders, literally flying the flag