Hello! I am a researcher in need of expert advice...

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jessamyh

jessamyh

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Hello everyone 🙂

My name is Jess and I am a researcher interested in the personal/emotional/social aspects of diabetes. I am particularly interested in the feelings of blame/control/influence people feel in regards to their diabetes and related complications- I think there is a huge culture of blame around diabetes (especially type 2 diabetes), and I think this can be very unhelpful. Any insights you would like to share with me on this topic would be very much appreciated! I would also appreciate any feedback on my doctoral research proposal which considers these themes in regards to diabetic amputation in particular- any comments are welcome! (http://diabetessupport.co.uk/boards/showthread.php?t=44539)

Warm wishes to all,

Jess.
 
Hi Jess, welcome to the forum 🙂 I agree that diabetes, particularly Type 2 is regarded by much of the media as self-inflicted, and people are made to feel guilty that they have it, and also made to feel that if only they lost weight they would be cured - this is very far from the truth for so many reasons, and I wish that the general public could be much better informed.
 
Thank you 🙂

It definitely seems to be a very prominent message in the media, and one which I feel a lot of the public at large seem to think they know more about than they actually do. I think it's a shame that rather than offering support for people who are diagnosed with diabetes, there's a tendency to stigmatise instead. This can't be a very helpful approach in helping people come to terms with a diagnosis and the considerations which come along with it!

Do you have insight on whether the same feelings of blame might be attached to diabetes related complications (like foot ulceration), in terms of either health professionals or the media? In the medical literature there seems to be a lot of focus on prevention of complications, but I'm not sure whether/how this emphasis is communicated to people with diabetes. Any thoughts?
 
jessamyh said:
Thank you 🙂

It definitely seems to be a very prominent message in the media, and one which I feel a lot of the public at large seem to think they know more about than they actually do. I think it's a shame that rather than offering support for people who are diagnosed with diabetes, there's a tendency to stigmatise instead. This can't be a very helpful approach in helping people come to terms with a diagnosis and the considerations which come along with it!

Do you have insight on whether the same feelings of blame might be attached to diabetes related complications (like foot ulceration), in terms of either health professionals or the media? In the medical literature there seems to be a lot of focus on prevention of complications, but I'm not sure whether/how this emphasis is communicated to people with diabetes. Any thoughts?
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Support can be very patchy, if the experiences of the members here is anything to go by. Many health care professionals appear to carry the same prejudices and misconceptions, unfortunately. Although 99.999% self-managed, people are often prevented from taking control by being denied the tools required i.e. home blood glucose monitoring. Many people do not receive the regular checks that might uncover a potential problem in the early stages e.g.checking of feet by a podiatrist. Some people are left feeling that complications are inevitable. :(
 
Hi Jess just tried to email you and for some reason not able to. Would be interested in helping you with your research. I am a type 1 with complications. If you could send me a pm with your email address I will reply.
 
Wow, sounds like you have it pretty tough :( Since looking into this topic I've started to notice the posters about things like the importance of getting feet checked and monitoring glucose levels, but I had no idea the provision to let people actually do so could be so patchy! I'd never thought about how much self-management itself relies on others being co-operative.
 
HERE TINTIN: Sorry I'm apparently so hard to get hold of! Another member has alerted me that I might not be able to send/receive PMs until I've posted a certain number of messages on the forums- I'll be straight in touch as soon as I'm eligible 🙂
 
Thank you Jess, I look forward to hearing from you. I think your research is very worthwhile. TinTin
 
In lots of cases deterioration and complications are almost inevitable for many T2s when Doctors refuse them test strips, but that's assuming that the patient even knows to ask for them. A high proportion of patients are told that the only necessary testing is the Hba1c which may be done 3/6 monthly, or worse, annually. Add to that the diet often recommended by the NHS dietitians/surgery nurses etc is one guaranteed to result in poor control and progression of the disease. Many of them advocate the "eatwell plate" which consists of 40% carbohydrate, the very foods which raise BG. Patients are told to avoid fat & sugar but to eat cereals, wholemeal bread and brown rice - all of which raise BGs. Effectively any and all tools for personal management are taken out of the hands of the patients. Education is poor in many areas, if not downright criminally wrong. Until such time as this changes then complications are going to continue to escalate and the cost to the NHS will only increase - not to mention the suffering of the individuals.

Sorry for the rant, it's something I feel very strongly about. Being a T1 my treatment is light years different to that inflicted on T2s.
 
Hi Patti,

Sorry it has taken me so long to reply!

It sounds to me that a lot of you end up having to take control into your own hands; you've clearly learnt a lot about your diabetes without the help of your doctors. What do you think lead you to be able to educate yourself on these matters?
 
jessamyh said:
Hi Patti,

Sorry it has taken me so long to reply!

It sounds to me that a lot of you end up having to take control into your own hands; you've clearly learnt a lot about your diabetes without the help of your doctors. What do you think lead you to be able to educate yourself on these matters?
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Hi Jess,
I suspect very few Drs actually have any idea about the day to day living with diabetes.
All they see is numbers, those numbers do not explain how cr*p people feel if those numbers do not add up, nor can they relate to swings in blood sugar and how it makes the person with diabetes feel.
Bottom line is the A1c and the extra dosh they get if a patient has it below a certain level, no matter how it was achieved.

I've been type 1 for 49 years and have sod all support from anyone except my present GP who is ace. I am complication free and that is down to me and all the help I had from my mother as a young child and teenager. I attend no clinics and just get on with life.
 
"particularly interested in the feelings of blame/control/influence people feel in regards to their diabetes"

"What do you think lead you to be able to educate yourself on these matters?"

Hi jessamyh, 🙂

Your second question is easy to answer in my case: motive was fear (reading the complications) and opportunity was web.

I feel angry for all those diabetics who just accept (why would they not) NHS advice on T2 as given by many health care professionals (eloquently outlined above). It is no thanks to official guidelines that I've got my diabetes under good control (for now) without meds. I wouldn't have got my BMI healthy either because I'd still be packing in all those recommended carbs.

If I hadn't found this forum and followed links to real experts, I probably would've accepted the official mantra too: T2 is progressive; you will go on meds and why would you want to test yourself when you can just eat what we tell you?

The official glycemic targets are set "good enough" for diabetics because we can't be trusted to work to get better control (without knowledge how would we know where to begin?) and so on and on. Before the internet what else would we have done?

Sure, the web is full of snake-oil (UK-based health and science pros aren't as generous with their knowledge online as other countries) but you can find loads of excellent advice and watch endless university video seminars on any range of related stuff, as well as keep up with studies on Medscape etc.

There's nothing like fear to make you want to learn!

Blame? For years I ate what the guidelines said thanks to Ancel Keys and his ilk. So we can blame him to start and the committees that set the food pyramids for seconds. And who let food manufacturers stuff our shop shelves and our kids full of "healthy" sugar? Politicians AND the medical establishment.

And now they want the whole world to take statins to cure a problem that has no science behind it. None. But think of the profits.

We're all consumers first and patients last.

It'll need a younger generation of doctors and scientists to admit the last fifty years' diet advice is insane.

Must mind my blood pressure... :D
 
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