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This Is Really Hard

Grateful

Well-Known Member
Messages
1,399
Location
Kent, United Kingdom
Type of diabetes
Type 2
Treatment type
Diet only
I've been a denizen of Internet fora for years, but usually these are hobby sites, where the worst thing you might do is give bad advice that results in someone ruining the paint job on their Spitfire plastic model.

This is the first time I have been an active member of a place where life-and-death issues are being discussed.

As someone who is now nine months after Type 2 diagnosis, I perhaps know a little bit more than the newly diagnosed newbie. So I have been trying to share what I know.

It is awfully hard. How does one give helpful "nudge" advice without coming across as a "nanny" or worse, a "bully"? How does one avoid scaring people, while maintaining the seriousness level fairly high (this is a nasty, chronic disease). What is the difference between a (metaphorical) "healthy kick in the pants" and a psychological aggression? We know very little about the members we are "speaking" to so how can we possibly know how they will react?

Perhaps hardest of all, how does one give suggestions without shading over into giving "medical advice" which really should only come from a doctor?

What about the complex cases such as @Robbieswan where the situation changes so fast that anything we say can be nullified (and turn out to be well-meaning, but possibly bad advice) within hours or days by developments?

On the whole I am amazed at the tact and compassion shown by forum members. I wish I had found this place earlier!

I was going to post this in the "General" part of the forum but I think it belongs in "Diabetes Discussions." If the mods disagree, they are most welcome to move it to wherever it fits. (I hope I have not transgressed the forum rules in the subject matter of this thread. I did read the rules when I joined and I think this is OK.)
 
The onus lies with the reader (apart form deliberate nastiness, nobody should tolerate that) to make sense of it all. We know that the vast majority of newly diagnosed are given very little help and belittled by their HCP’s, coming here often sets them free.

The sooner we realise that we are all responsible to manage our own health and not rely on strangers to do it for us (and blame them when we get it wrong), the better.
 
I agree it is often difficult, and I supect I sometimes come across as a bully or a fervent fanatic. The best advice I can give is that we are encouraged to describe what we do, what works for us, and what experience we may have gleaned from outside sources that we might share on the forum by posting a link. We do have to be careful giving any medicine advice and must declare that the any changes should be discussed with a Health Care Provider (HCP or GP) ditto when discussing health supplements if they can affect bgl levels. Even dietary advice can be a minefield.

If you read the posters charter, then most likely it will be fully compliant, If not then a Mod will email you and tell you so, or just move it to a different place if necessary. Or someone will reply to your post with a different POV.
 
Another thing, coming from a relative newbie (but that is sometimes what can make the point of view interesting).

It is shocking how badly informed some of the newcomers are. At first I even thought some of them were pulling our legs.

This is absolutely no fault of their own. But we have people who have been seeing their GP regularly and were diagnosed either recently, or in some cases years ago, and were not told the absolute basics about the disease, how it is monitored, and how to control it.

Gosh I realise that sounds awfully naïve on my part.

It is also compelling, and heartening, to watch people eagerly educating themselves here. But for heaven's sake, can't we as a society do better than this?

I include not only the UK in that remark, but also the United States where I live, and where diabetes is rampant. By pure dumb luck I ended up with a wonderful GP and did not really need this forum to find out "the basics." Apparently, an awful lot of people fare much worse.

Disgraceful.
 
I am a complex case in every sense of the word, but it's people on this forum with unlimited compassion and support that has got me through. Never underestimate the power of the written word. I think Shakespeare said that if he didn't,I did just now.
 
It's down to the individual what to take on board. I have asked numerous questions and have had a lot of good advice. Some advice may not be appropriate but that advice can be used or just put to the back of your memory bank.

I knew nothing regarding foods etc after my type 1 diagnosis, but the power of the internet has helped me greatly. If I didn't have access to the internet then I would not be as 'clued' up as I am now (clued up as in, knowing basics of carbs and insulin etc).
 
It is a learning curve for every one of us.
 
Grateful said:
Perhaps hardest of all, how does one give suggestions without shading over into giving "medical advice" which really should only come from a doctor?
Click to expand...

I try not to advise, but happy to share experiences. I think a classic example is the number of people who say that Metformin has little effect. Not in my case by a long shot, but that's just me, it will be different for everyone. We are all different, a lot different.

I never mean to offend, but the written word is pretty useless at conveying things, there's always the opportunity to be misinterpreted.
 
DavidGrahamJones said:
I think a classic example is the number of people who say that Metformin has little effect.
Click to expand...

That needs to be put in context. I am one of these. Not because I don't think it has some effect, but because newbies are often given the pill and sent away with poor or no dietary advice in the belief the pill will solve all their blood glucose issues. In the last couple of days alone there have been people believing Metformin will stop a post meal spike in its tracks and wondering when is the best time to take it to make this happen .... even one newbie believing taking a Metformin in the 2 hours post meal period will prevent a proper analysis of what that meal has done to his levels. It is right, in my opinion, to explain exactly what Metformin does and what it doesn't do.
GP's should explain all this, but how many do, and how many actually know how it works?
 
Bluetit1802 said:
It is right, in my opinion, to explain exactly what Metformin does and what it doesn't do.
Click to expand...

That's fair enough. I made the distinction and said "in my case", hopefully inferring that it's not the case for everyone. Over the last year I have just read that Metformin does very little without indicating that there is another side to the coin. I'd like to just say that it affects different people in different ways. For me personally, just me, I have noticed the difference in my BG (gone up) now that I'm not taking Metformin.
 
Sometimes some people here can get quite carried away in the advice they give new people They are so enthusiastic about what they do that they think everyone should to do the same as them and that can seem like a nanny state rather than a support forum . Just recently we have had comments here like... the carb police, born again low carbers and scaremongering... so obviously that's how it has come across to some people and not a good image for the forum.
 

I’ve been here since 2008, nothing gas changed.
 
For every ten replies I start writing, I post one, if any. The longer I browse the forum the more limited my experience seems. I have plenty of opinions but rarely much information that might be useful to the OP. The best I can hope for is to make the newcomer feel welcome. And remember to say thank you to the forum.
So ... thank you.
 
Pinkorchid said:
They are so enthusiastic about what they do that they think everyone should to do the same as them
Click to expand...

I think it's natural, when you find something that helps you and you want to tell the world. After my father, brother and cousin, all type IIs, decided not to listen to me I realised that it takes all sorts and we're all totally different. I try my best.
 
I think all any of us ever can do and do is offer advice based on personal experience. I would not be in a hurry to underplay the value of this advice. The last thing in the world that I want to do with this reply is devalue what a qualified medical opinion offers us all. The thing is though all too often qualified medical opinions seem to come from medical text books and not always from the real world. The other consideration of course is that a great number of diabetics are specialists in their own condition or at least how their condition affects them personally. I have personally sat in front of my own GP and been given advice which at times I can see the logic in possibly avoiding. In this respect I am far from unique since I suspect a vast number of you have similar experiences. The very nature of an Internet Forum is that I come here and offer what little bit of information I can. 10 other diabetics come along with their bit of information and we all walk away 11 times better off than when we started. That is 11 real life experiences of a condition. Multiply this by the number of contributing Forum Members we actually have and the possibilities must be at least comparable with an overworked GP offering a ten minute appointment and 25 other poor pilgrims in his or her waiting room attempting to have their coughs, colds and or hemorrhoids treating
 
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I have always tried to help myself, and I have enough scientific training to do it rationally and carefully. How many people blindly trust their doctor, assuming they know best? It sounds like sense, but it could have cost me my life on one occasion. A long story I won't bore you with now, but a very valuable lesson. This forum gives us all a chance to see and consider other peoples experiences. Its all data to be considered and weighed up, a valuable resource. However, everyone is different and not just in what works for them, but in how they deal with the world and their illness. I happen to be one type who never rests in the quest to learn. Others find a comfortable position and switch off. They do not seek more and the easy route is the one they choose. Potentially dangerous. Bad information and ignorance of facts is equally lethal. If I have learned anything in life, its that you can never learn too much.
 
Exactly none of us know how it will affect us until we are taking it
 
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