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?


  1. You're right Anna, absolutely right.

    I think Dr Lustig puts the argument well in that it's never anyone's fault, it's down to their leptin sensors.

    You might find the couple of minutes which follow each of the clips interesting - once you've got past the adverts

    1. Thanks thanks for the links Kev, and for posting your thoughts. I look forward to checking links out.

      Diabetes is such a complicated condition and there are many causes of obesity. I haven't even touched how other endocrine disorders affect weight. I guess I just feel more connected to T2s sometimes because I 'get' the weight thing.

      It's good that people are starting to realise that we just can't continue this way if we truly are committed to reducing stigma.

  2. Well said. I often seem to be of the less popular opinion when it come to the renaming debate. I disagree that it should be a way forward to seperate the kinds.

    Do you know of Jen Nash at Positive Diabetes? I am going to start working through some of her resources to address my eating.

    1. Hey Nikki,

      I did hear her talk once around three years ago. I am so pleased you're seeking help! Please let me know how you get on.

      I also share your views on the re-naming debate and has a post in the pipeline. I think understanding the differences (and variation within!) the kinds of diabetes is important, but many times the names suggested are wildly confusing an the attitudes around why we should rename are totally prejudiced.

      I feel like we could talk for hours!! :)

  3. I kind of want to hug this entire post I agree with it so much. I'm like you - a type 1 who is obese and struggling with food/issues. The media stigmatisation is bad enough, but it makes me really sad when I see people in the DOC do it - how is this supportive?

    The one that especially gets me is this: ""I didn't deserve this, I didn't do anything to get this" because whenever people say this there's the implication that the "others" somehow *did* do something to deserve it.

    This kind of thinking doesn't help anyone with diabetes, and separates us as a community - we're all dealing with the same crappy disease, it shouldn't matter which type - and I'm with you and Nikki on the renaming issue, and I get surprisingly angry when the same old derogatory arguments are trotted out as to why it should happen.

    I think it's like you said - I identify so much with the disordered eating, and I want to scream at people who say it's just about "eating less and moving more!" It's not, it's really, really not - there are so many other factors going on. I really admire you for going to your dietician for help - that takes so much courage. :)

    1. I could not agree more and know exactly how you feel. If we talk about being in the same boat we need to mean it; to walk the walk as well as talk the talk. I truly believe that the only successful way to manage long term chronic conditions is through solidarity, and to understand that things are rarely as straighforward as they seem.

      If you ever feel ready, maybe speaking to someone may help you too. Just someone who can help make sense of it with you and give you the tools to understand why, when and how you struggle to manage. The whole 'eat less, move more' thing is completely antiquated!