More Support, less Advice for Newbies

You are not wrong @lucylocket61 and I blogged on a similar subject recently. Also we have had a rash of long serving members leaving recently so something new is upsetting people now.

This is just my personal opinion.

When I was first diagnosed with an Hba1c of 100 and my GP told me that there was no hope, that diet and exercise would not work for me, and that there would be no choice but to go onto insulin -- I would have liked to be told that a low-carb diet can be life-saving.

I feel compassion is important, but hope, advice and knowing that others have been able to turn this around are also helpful.

I was diagnosed with a HbA1C of 99 and fasting blood glucose level of 13. I was told to take 2x500Mg metformin daily, cut out sugar and do more exercise. Five weeks later I saw a diabetes nurse and was given a glucose meter. My first reading was 9.8.

Shortly afterwards I saw the video by Sarah Hallberg on reversing type 2 diabetes and this paved the way for me to reduce my blood sugars down to non-diabetic levels. A few weeks later they had dropped to around 6.5. My next HbA1C numbers were 59 and my diabetes nurse was amazed at the drop. If I had just listened to my GP and diabetes nurse I would not have significantly reduced my blood sugars. They would still be high and I would be at high risk of neuropathy, retinopathy, heart attacks, strokes and Alzheimer’s.

I did watch that BBC Panorama program Diabetes the Hidden Killer shortly after being diagnosed as type 2. Seeing that type 2 man having his leg amputated at the start of the program was a bit shocking. It’s a pity he was not lucky enough to get the correct advice to manage his diabetes before it was too late.

T2 and T1, while both being part of the diabetes family, are fundamentally different diseases with different aetiologies. . Within the UK (at the very least) a T2 diagnosis itself can cover a whole range of different variations of disease type, age, progression etc etc.Similarly a T1 diagnosis can cover differing situations ( primary early onset T1, Lada etc) Then of course theres always T3c, reactive hypoglyceamia etc to factor in with their individual aetiologies and treatment needs
While generic diatary advice may hold some relevance To all forms of diabetes at some point in the diseases’ progression, there is no dietary advice that will cover all types at all points, let alone each individual

If someone doesn't like what's posted on here then I have one piece of advice make sure that you don't post like it yourself. IMO We can only be responsible for what we post. So if someone thinks that the newly diagnosed needs to be comforted and supported then that's what they should be doing. If yours is the only post that is written that way and that is what the new person needs then your post will be the most valuable to that poster. @Pinkorchid ? I think stuck their neck out and supported a new poster only the other day, which was against the flow of 'testing advice'. Pinkorchid was spot on and that post was what was needed i.e. the poster wasn't in a place where testing was what they wanted to do. They simply couldn't cope with the idea of testing their bloods. It is hard to post about a different approach but if you feel strongly then do it because you post might be just the approach that the new person is needing.

I know that people have posted before that if someone wants more info then they can search for it. It's not the most user friendly forum to search for information on. I've found out that when I've tried to search for specific info. As a new person I didn't want to be asking questions. So for me being given advice on diet and testing right from the start worked. i.e. people generously gave it to me without me having to ask or search for it. Lazy or what! Actually I was very low and I needed the help. I needed hope and something to focus on was given it.

BTW because of posts like yours I rarely post anything to newcomers to this forum. I do sometimes read some of the posts or if I notice someone who has posted and no one has replied or they have what I think of as tricky diagnosis I report their posts to the mods for them to respond.

Edited by moderator to remove a personal attack on another member.

It's a matter of life or death, you can't sugar coat it. It is that important.

Boo1979 said:

T2 and T1, while both being part of the diabetes family, are fundamentally different diseases with different aetiologies. . Withing the UK (at the very least) a T2 diagnosis itself can cover a whole range of different variations of disease type, age, progression etc etc.Similarly a T1 diagnosis can cover differing situations ( primary early onset T1, Lada etc) Then of course theres always T3c, reactive hypoglyceamia etc to factor in with their individual aetiologies and treatment needs
While generic diatary advice may hold some relevance To all forms of diabetes at some point in the diseases’ progression, there is no dietary advice that will cover all types at all points, let alone each individual

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Which is why this forum is so great. The sheer amount of information on here is amazing.

I think that people are being much more careful about finding out new posters backgrounds and asking questions.

Its always going to be a difficult area, what to offer someone newly diagnosed. Everyone reacts to diagnosis in some way, but the clues are in what they do next. Coming here shows a desire to know something. What do they seek? Comfort, knowledge, hope? Probably all of those. Perhaps a message on the lines of don't panic, there is a community of a quarter of a million here, all on a journey related to yours and understanding of how you currently feel might be the sensible first response. That awareness of not being alone and that even if those around them do not appreciate their situation, others do and are available to talk to is hugely valuable. It is a start, and in itself offers comfort and hope.

When I was diagnosed, I sat and watched the forums for many weeks before feeling confident enough to ask questions or comment. I learnt a lot by watching and I also bought Dr David Cavan's books which are great as they explain so much about diabetes, the complications and how to avoid them. The different medications are described too.

I agree that we should be supportive first and foremost. All I wanted was a hug and to be told that I wasn't alone. Diagnosis is a very lonely place.

I understand why some think that advice can be inappropriate, but I think I will have to disagree that it should be stopped. The "advice" I was given by my dn was to eat the eatwell way. Take the medication . Be prepared to see the numbers gradually go up and accept the progression.

I came on here and found advice about lchf. Forget eatwell. Dont passively accept the advice I had been given else where.

I think I am capable of deciding what advice to accept and what to disregard. If I get it wrong, after I have read around the subject then that is my decision. I am not going to say that other people are less capable than me. I am sure that you are all quite capable of making a decision for yourselves and have no wish for a paternalistic forum which decides what you should be told. If I have that wrong I apologise.

When we come on here most of us have just had a dx. We are a bit raw and mostly confused. Google t2d and you will find a host of cures, just send some money. Or youtube vids about amputations. There is a great deal of advice that will leave us blind and poor, should we choose to follow it.

On here, it is people who have tried the diets they espouse. They have found what works for them. There are even those who have taken themselves back to prediabetic levels on a normal carby diet. (Didnt work for me, but I would still advise a new t2d to try it if their meds allow.). People on here have lived for years without losing thier toes or vision. This is not the future my dn can see when she gives out the normal nhs advice.

We get advice from everywhere. It comes on the tv in documentaries, in the newspapers or on the wall of our surgeries. This forum provides a much needed balance. And nobody has a right to say what other people can or cannot read.

I do agree that there needs perhaps, to be a more overt recognition of the fact that newly dx diabetics do not always recognize the difference between the different types of diabetes. Nor that there may be confusion amongst the medics at the beginning of the type of d that they have. However, the fact that the nhs is failing to give basic information out to newbies is not the fault of the forum.

I dont really know what to do about this. Perhaps a more info filled page when we sign up? Or a daisy type automatic introduction that pops up as soon as we sign in?

I don't know how a forum would work that only allowed support and no advice for newbies, unless it was against forum rules to give advice to people who have just signed up. For how long is a person a newbie? How would the forum decide if someone understood the advice? What if a newbie asked for advice? Would we say " sorry, you are not ready for that info?"

I will have to admit that I am against withhold information form.people on principle. And that no doubt colours my opinion on this. Happy to try and understand why some think that withholding info is a good idea.

Interesting thread.

I think one of the most important things is to tailor advice to answer the question the poster is asking. To my mind this is part of respecting the other person and is also the one most likely to produce advice that someone sees as relevant and is likely to be able to make use of.
The situation of someone asking these questions may ultimately turn out to be identical (but not necessarily so )and the most relevant answer at the time of asking will vary
Q1 - Ive just been diagnosed as ..... what can I do?
Q2 - Ive been dianosed as ....., Ive tried x but its not working What else can I try?
Q3 - Ive been diagosed with ..... I’m trying x with some success but am experiencing this issue How can I modify it?

JohnEGreen said:

It's a matter of life or death, you can't sugar coat it. It is that important.

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The 'issue' with making the forums all-inclusive is that everyone is entitled to an opinion as long as they are polite with other members. This undoubtedly gives rise to conflicts and it probably always will. The forum is dynamic and always changing by nature.

There has to be a recognition that people come to these forums for a multitude of reasons. Some come here looking for emotional support (which may be needed for some time) and a need to know that they are not alone. Others come here seeking a specific answer to a specific question and we never see them again.

Some new members find us after being diabetic for several years and want to know how to improve their situation. Others will have just been diagnosed and will feel confused, perhaps even isolated.

Some established members appear to believe passionately that diet is so significant that it should be addressed immediately. The OP may have the presence of mind to process the information, they may find it overwhelming, how do you decide?

Ultimately the members make the the forum what it is. From the moderation point of view we obviously cannot censure posts unless they break forum rules or fail to live up to the ethos of what we are about. From a personal point of view, it is interesting that this subject has been raised and I (and I'm sure the moderation team as a whole) will be following this discussion.

It's called advice, nobody has to follow it. This is a forum, the nature of forums is that everybody will post what they want within the rules and the onus is on the reader.

I wasn't confused, dazed, alone and worried when I came here, I was fired up, excited and raring to take control and within 24 hours, I did. Back then, low carbers would die of scurvy and malnutrition to name but a few, the advice given by some has now proved to be not only based on dogma but dangerous.

Verbally patting people on the head and declaring 'there there' helps nobody.

lucylocket61 said:

I am NOT suggesting we stop posting dietary advice. I am suggesting we find out any details we need, that might influence that dietary advice, before going further, and offer support while we find this out.

Some posters clearly put that they want any advice, and their type and medication. Some dont, and I think we need to backtrack a bit and hold off the deluge of advice and experience until we are on sure ground.

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You do that then Lucy and others will do what they do.

lucylocket61 said:

Yes it does, it helps them become less frightened, to know they are not alone, reducing stress and therefore reducing blood sugars.

Support can be as valuable, in the initial stages of contact, as dietary advice. Then the posters know we are helpful, supportive people and may be more open to dietary changes and medicine considerations (statins?) than they would be if they post once or twice and get told they must stop most of the food they eat, against the advice of the HCP's. Why would they trust us if they havent got to know us? we may just sound like some extremist nutters off the internet. We know what we do works, but they dont, and their HCP's will be telling them the opposite.

Stepping back for a post or two does not harm for most newbies. Its different if someone is showing signs of type 1, but that is a medical emergency anyway, and we should only be telling them to get medical help in that situation.

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Like I suggested Lucy, you stick to what you think is right and let others do what they think is right.
Had someone verbally patronised me when I first joined, I would have ripped their heads from their shoulders (metaphorically speaking of course).

woodywhippet61 said:

If someone doesn't like what's posted on here then I have one piece of advice make sure that you don't post like it yourself. IMO We can only be responsible for what we post. So if someone thinks that the newly diagnosed needs to be comforted and supported then that's what they should be doing. If yours is the only post that is written that way and that is what the new person needs then your post will be the most valuable to that poster. @Pinkorchid ? I think stuck their neck out and supported a new poster only the other day, which was against the flow of 'testing advice'. Pinkorchid was spot on and that post was what was needed i.e. the poster wasn't in a place where testing was what they wanted to do. They simply couldn't cope with the idea of testing their bloods. It is hard to post about a different approach but if you feel strongly then do it because you post might be just the approach that the new person is needing.

I know that people have posted before that if someone wants more info then they can search for it. It's not the most user friendly forum to search for information on. I've found out that when I've tried to search for specific info. As a new person I didn't want to be asking questions. So for me being given advice on diet and testing right from the start worked. i.e. people generously gave it to me without me having to ask or search for it. Lazy or what! Actually I was very low and I needed the help. I needed hope and something to focus on was given it.

BTW because of posts like yours I rarely post anything to newcomers to this forum. So people like you have silenced me (does that make you feel good?). I do sometimes read some of the posts or if I notice someone who has posted and no one has replied or they have what I think of as tricky diagnosis I report their posts to the mods for them to respond.

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I completely agree with your last paragraph. It has affected me like that, too - but to the point when I don't post much at all any more. This forum used to be my 'safe place' where everyone pulled together but, sadly, that is no longer the case.