Thursday, 17 June 2010

Fighting amongst our own

In the recent past I joined a group called "Rename Type 1 diabetes".

You may wonder why I joined this group and I will gladly explain. All too often T1 and T2 are grouped together and the education provided about them is vague and wildly misleading.

For example, there is currently a public service advert on television called "Change for Life", which challenges people to make small changes to their lives like eating less fatty food or getting more exercise, to avoid them leading an unhealthy life. One of the threats the advert makes, is that "too much bad fat in your body can lead to diseases such as diabetes".

OK, I already have diabetes, so what is going to happen to me if I eat bad fats and become grossly overweight? Will I get a double dose of diabetes? Will I get diabetes worse than someone else? Erm, no! And that is because they are referring very specifically to Type 2 diabetes. It is a medical IMPOSSIBILITY to get Type 1 from being overweight, or drinking too much, or eating too many sweets or standing on your head.

Conversely, all too often people refer to type 1 diabetes as "the worse one". What does that even mean??? The worse one? Is that the evil twin of type 2 diabetes, a good cop bad cop situation? No, there is a common misconception that type 2s have it easy or are better off than type 1s. The fact is, people with type 2 (WHO HAVE IT FOR WHATEVER REASON) are often diagnosed far too late. By the time they have been, they have diabetic ulcers (I challenge you to type that into google and have a look at the images). They will have heart problems, circulatory problems and more.

I joined this group because I felt it was vital to rename both T1 AND T2. However, since joining the group, I have noticed that the comments on the wall are anything but constructive and show that there a enormous problems stemming from much further down the food chain which we have to deal with first.

There are clear attacks on people with type 2 who are asking others not to tar them with the same brush as those who do allow themselves to get morbidly obese, thus triggering diabetes in their body. To that, I have seen the most enormous assumptions that type 2s have it worse that type 1s and that it is "far, far more complicated".

Equally as ignorant, there are type 1s on the site purporting that all type 2 are "fat, lazy, slobbish, do not do enough exercise and do not eat right."

Which cave do you live in again? I would like to come visit to see how angels live!

Of the Type 2s I know only 1 has the condition after weight triggered it (we think). Coincidentally, this person is on 4 injections a day followed by 19 pills. She is being refused access to the diabetes clinic and has the most awful time controlling her condition. Does she still have it 'better' than me? I would argue not. If I have an issue I can email, call or even text my DSN to ask a question. My friend has to go to her GP. Bearing in mind GPs have shockingly limited knowledge of the finer details of diabetes, I am genuinely more concerned for her welfare right now that I am for my own.

The other T2s I know are people who just got a bit older. Are they to blame because they got older? That is a rhetorical question - I beg you not to answer it.

Further, there is growing overwhelming evidence that even type 2 diabetes is all down to genetics; that type 2 diabetics are predisposed to the condition. The fact is, weight is one single trigger for diabetes. We know that age is another, but our knowledge of the triggers for type 2 (and type one for that matter) are horribly under-researched and often assumed. We only 'know' type 2 is triggered by weight because of the sheer amount of people who are overweight who did develop it. But what about all the people who don't fit 'the norm?'. I have heard of genetics being involved in diabetes somehow - and where have I heard it - oh yes, it was about T1 funnily enough...

The fact is Type one and Type 2 diabetes are devastating illnesses. Type one diabetics will live no more than a few days without insulin. Type 2s can survive for years without knowing they have it, with absolutely devastating effects.

Why are we arguing amongst ourselves? I have type 1 and have done for 23 years. I joined this group because I wanted the recognition and education about BOTH types because giving diabetes an ambiguous 'one-size-fits-all' name is completely inappropriate. The two conditions are vastly different, they just both happen to involve insulin. That's like saying brain cancer and skin cancer are the same thing. They are the same type of disease - but the way you diagnose, treat and live with one is vastly different to the other.

But sitting here reading these comments makes me realise some diabetics are far too busy convincing other people they have it worse than others, to be able to dedicate any time whatsoever to tackling the real issue - EDUCATION! How are we to take this issue to a wider audience and tackle their ignorance, if we are not yet over our own??? We are making just as many assumptions about one another's condition as other people make based on the ill-informed 'education' they are offered from the so-called policy makers.

There are type 2s everywhere who think they know it all about type1s. There are type 1s everywhere who think they know it all about type 2. I have had type 1 most of my life, and yet I still don't know it all about type 1.

How so many people can think they know it all is beyond me. And how we are supposed to educate people whilst there is so much dissaray amongst our very own ranks is also beyond me.

Even if we do succeed in changing the name, bringing about long needed differentiation between the types, no change will come about unless we make sure we educate everyone. This will never be achieved if we make so many assumptions about diabetes.

In fact until we can open our minds and accept that we need to change our own attitudes, changing the name will do a big fat nothing to people's understanding of the disease.

And when it comes down to it, that is all it is about - changing people's understanding.

How are we to change understanding through advocacy if we are so confused about our own disease?

I think we can safely say, until we adapt pur own attitudes, we will never be able to educate others.


  1. anna excellently put x thank you

  2. Fantastic post anna :)
    really enjoyed Reading it and it was very thought provoking.

  3. That was an excellent post. I'm not part of that group myself, because I think better and clearer education will go further than renaming, but I agree that it does absolutely no good to fight amongst ourselves.

    United we stand, divided we fall!

  4. Dear Anna,

    what an interesting and very well written article! I enjoyed reading it and agree that infighting is not the solution.

    To be honest, I think a lot of the anger and frustration behind this is based on bad experiences of one or the other condition. Also, I believe that many T1s, such as my self, feel unfairly judged and that resources are being diverted away from our (usually, not always) more acute needed care because of the domination of T2s.

    Have you followed the reports in the news recently that over two thirds of T1s in the UK are not even getting the most basic care and treatment because of the focus on T2s? Perhaps this is one of the underlying issues resulting in the venting of anger on the FB page?

    I also feel that tip-toeing around T2s and the ‘cause’ of their condition is doing everyone a disservice... of course, not all Type 2s have the condition because of weight issues, I understand that age, pregnancy, certain genes, environmental factors, etc, are all causes and contribute. In fact, I’m sure there are other factors we are not even aware of yet… however, according to the lastest DOH statistics at least 70% of Type 2 Diabetics are overweight. This is not meant as an attack, blame or a guilt trip, but a simple recognition of a dominating factor. Why is it therefore that T2s (with weight problems) are so sensitive to it when recognition and acceptance of the fact could help save their lives? Do you think this lack of acceptance (where relevant) could be helping to fuel this infight?

    Anyhow, just some thoughts on a rainy Friday!

    In the end, I agree with Becy that long-term education is the way forward. However, without a name change and the fundamental shift this would help engender, I believe education will ultimately fail.

    Sincerely, and with best wishes to all,


  5. Is it not a bit contradictory to propose renaming both conditions but also put forth this "united front" idea about no "in-fighting"? I wouldn't call it in-fighting, because to me they're completely different conditions. I don't care how complicated type 2 diabetes may be, type 1 will always be the worse of the two. An extreme statement, maybe, but one I stand by fully. Type 1 robs you of the prime of your life by making sure you never have a prime at all. A twenty year-old shouldn't have to feel like their body is crumbling away. By the time I'm the same age as the majority of type 2 diabetics I will more than likely have the same complications as them and more, if I manage to reach that age at all.

    Anyway, either they're seperate conditions or they're the same, can't have it both ways.

  6. Thanks for all the comments everyone. I completely agree that education and in many cases re-education are the key. However, I still stand by the fact that whether type 1 or 2, each condition is equally as devastating.

    It's interesting Jude that 70% are overweight and perhaps this is a damning fact that people with type 2 (and educators) need to face. But it still felt to me that people who were type 2 and overweight did not deserve any sympathy for their condition on this site. Something I find frustrating.

    I just felt that the personal attacks on the website were unnecessary and until we can appreciate that others have it just as hard as us, we will achieve nothing.

    I have a fantastic team, am on a pump, have an a1c near ideal and even though I find this condition frutstrating, I feel very supported.

    I have persoanl experience of people with type 2 having no support and not even knowing what insulin does because they have never been given this education. I find that a travesty.

    Anonymous, I think it is interesting that you say it is a different condition. I think this is very valid, but the nature of diabetes is that it is unlikely it will ever be recognised as such. Just the same in which many diseases manifest themselves in different ways. They are the same disease but with very different outcomes