More Support, less Advice for Newbies

[Grateful]

I agree with @lucylocket61 that people coming here, especially those just-diagnosed, are almost always looking for emotional and other support at a time when most of us can remember being shocked, scared and confused.

My profile is perhaps a little unusual in that I came here having already "reversed" my T2D with a low-carb diet alone, on the advice of my doctor. I did my denial, fear, mourning, acceptance on my own.

Finding this forum months later, I jumped in with both feet and now realize that I failed to pay enough attention to the raw feelings of the newly diagnosed -- even though I was myself in that position only months earlier. I was actually PM'd by a more experienced forum member who, very politely and quite correctly, suggested that my posts (even when they were accurate) were upsetting to newbies. I hope I've been more careful since.

Where I disagree with the OP is about dietary advice to newly diagnosed T2Ds (and even, those whose diagnoses were several years ago but have never tried low-carb). He is absolutely right that we need to know what drugs they may be taking, and include the necessary warnings, and point out that a low-carb option is not for everyone, and does not work for everyone.

But often, the information in the newbie's first post (or one of the early posts) is right there: Diagnosed with T2D, prescribed Metformin, not yet given any substantive advice. Yes, in those cases, I tend to go right into the story of how low-carb worked for me, and for many others, and provide info about how it is done. While including the important caveats.

I just think it is that important. If the medical community were doing their job, we would have a lot more time to provide "support" first and indeed that would be the primary purpose of this forum (maybe in a future paradise, that will happen). It is a scandal that this is not the case, and that therefore lay people such as ourselves have to take up the cudgels.

 

[Buttons11]

I came here when I was newly diagnosed by my GP who's only advice was "stop eating sugary things" and with an appt to see the DN 4 weeks later. I had no idea what I should or shouldn't eat and was (still am) so grateful to everyone who gave me advice in the beginning.
But even without medical training, I can see that T2s promoting low carb to T1s is not always the way forward.
I love the forum and everyone on it

 

[CherryAA]

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.

There has to be a mix - some people are good at saying " there there" others good at providing concrete examples of what is possible . New people will look for a mix of the two depending on personality, circumstance and diagnosis.

I personally found the details the signatures the most hopeful thing about it all. If everyone who is coping with the disease - ( whatever type) added in a short sentence to their signature to explain their position today that would be massively helpful to all newcomers who could see very quickly if the advice was coming from someone they considered to be relevant to them.

The day I joined, within a half hour I had a future again, simply because people like me had signatures ( like mine now) that said - this was sortable for me as T2 - through diet alone. That is a great message of hope when you are being assailed by negative press and incurable disease from all angles. At that point the main thing I wanted to know was " Yes its doable"- your signatures showed me that. I worried after that about the specifics because I then had somewhere to look.

 

[DavidGrahamJones]

I've only treated member's comments as personal experiences, statins is a good example, I appreciate people have no problems, others' like me put up with a lot while taking them.

I try to share my experiences and sometimes family member experiences.

Hopefully I have never advised anyone without saying "I'm not a doctor" but . . . . . .

The diet thing is strange because it has made such a dramatic change to many people's lives that I feel they are bound to be getting on their soap box. Personally, I appreciate that it's not for everyone. My own wife would be in trouble if she didn't eat carbs.

Hopefully I've managed to put something in my signature as a reminder that I'm not a doctor.

 

[lucylocket61]

There has to be a mix - some people are good at saying " there there" others good at providing concrete examples of what is possible . New people will look for a mix of the two depending on personality, circumstance and diagnosis.

I personally found the details the signatures the most hopeful thing about it all. If everyone who is coping with the disease - ( whatever type) added in a short sentence to their signature to explain their position today that would be massively helpful to all newcomers who could see very quickly if the advice was coming from someone they considered to be relevant to them.

The day I joined, within a half hour I had a future again, simply because people like me had signatures ( like mine now) that said - this was sortable for me as T2 - through diet alone. That is a great message of hope when you are being assailed by negative press and incurable disease from all angles. At that point the main thing I wanted to know was " Yes its doable"- your signatures showed me that. I worried after that about the specifics because I then had somewhere to look.

Good point about the signatures. I have just updated mine.

 

[woodywhippet61]

Presumably though, if youd just been given the advice to test and followed it for a week , you'd have very soon seen the flaws in the HCP advice by your BG results so would have been back for further advice - some people need to hear test and assimilate advice / info step by step in order to see whether / where it is relevant to them and their situation

Actually I saw the flaw in the HCP advice after my first test. I'd eaten cereal got a reading of 17.9 and it stayed up there for hours it freaked me out. I had a friend visiting and I was very busy, too busy to be looking on here for advice. I was lucky that I'd had the diet advice at the beginning so simply cut out the obvious carbs (apart from 1 jacket potato which again raised my bgl's). I had non diabetic range fasting blood, I felt fantastic and had my bgl's under control within 1 week - 10 days. Why mess about for a week testing when I could simply get on with things? Why would anyone want to just test and not actually do anything positive I don't get that.

If I hadn't ended this way then I'd have been back looking for advice. If I'd have spent a week testing foods and NOT actually doing anything other than freaking out about how high my bloods were I'd have been in a bad place and feeling like everything was hopeless. As it was the high reading confirmed to me what some people on here said so I went on my low carb 3 month experiment. As a non medicating T2 I had nothing to lose and everything to gain.

 

[woodywhippet61]

There is one thing that binds all people with Diabetes of all types, it is that we know how it feels to be diagnosed. We experience diagnosis differently but what can make a helluva difference to how we cope with our feelings is being able to take an active role in our treatment regime and that means gathering knowledge as a first step. The best place to garner that knowledge imo is in a forum like this that promotes self help and research.

There are those newbies who seem to need being led by the hand and this shows the differences in personalities. Sadly, a lot of us do not have the luxury of time. My dn 'threatened' me with insulin on dx. I found this forum and the members advice gave me the knowledge and understanding that I had a choice in my treatment regime. Without that advice my prognosis would not be what it is today.

It seems to me that there should be a balance between advice on approaching the physical aspects of one's diagnosis coupled with support in dealing with that very diagnosis. If we get the balnce wrong sometimes as individuals then there are always other members to redress that balance. That is, perhaps, why this forum works so well.

Yes I too was 'threatened' with meds (not metformin) can't remember which one now. I was told that I would never get my bgl's under control. I was given 3 weeks.

 

[Guzzler]

Yes I too was 'threatened' with meds (not metformin) can't remember which one now. I was told that I would never get my bgl's under control. I was given 3 weeks.

My immediate reaction was of hackles raised then to do some research. How many people are so scared by the 'threat' that they never return to their HCPs? There needs to be carrot as well as a stick.

 

[Grateful]

Yes I too was 'threatened' with meds (not metformin) can't remember which one now. I was told that I would never get my bgl's under control. I was given 3 weeks.

That's crazy. Here's how it went for me:

Me: "So what's my HbA1c?"

Doctor: "It's 8.3% [67]. Look, if it had been 15% [140] or something, I would put you on drugs right now. But let's try something else. I'd like you to go on a low-carb diet. Come back in a couple of months, we'll see how it's going!"

Similar message about drugs, delivered to both you and @Guzzler, but not voiced as a "threat." And, with a broad smile and clearly putting full trust in the patient (months later I shook his hand and thanked him for trusting his patients).

 

[CherryAA]

Yes I too was 'threatened' with meds (not metformin) can't remember which one now. I was told that I would never get my bgl's under control. I was given 3 weeks.

My doctor had arranged for another appointment within three days to begin my regime - which he felt would be not only drugs but insulin too because of how high my numbers are. Within that three days I had decided what to do myself - largely through the reassurance I received early on that the diet might work for me. That in turn gave me the courage to refuse all medications and all of their potential side effects. My health today is better than it has been in 40 years, as a result of the low carb lifestyle.

 

[archersuz]

I started cutting carbs whilst waiting for my meter etc to arrive. Once I had my meter I could see that I hadn't done enough carb cutting. Initially I wasn't ready to cut all carbs so I allowed myself a sandwich thin at lunchtime. That has now been replaced with low carb soup. I was convinced that I wanted to low carb - I just needed a few weeks to get where I wanted to be - assisted by testing.

Surely we need to test to inform our meal choices and to see that what we are doing is working for us? I for one wouldn't want to wait 3 months to find out!

 

[archersuz]

I would like to add to my previous post - I had gestational diabetes 22 years ago and surprised all the midwives etc by controlling BG with diet and testing. When my GP said not to test this time round, I wanted to test but it was the advice on here (not to me specifically as I didn't ask any questions initially) that convinced me that it was a good idea, and I found the recommendation of the SD Codefree meter so helpful. I had previously looked in a well known pharmacy and the meters and test strips were so expensive!

 

[Kristin251]

My doc ( 2 of them) told me I was fine with bg between 250-350 lol. Of course they continued to rise until I was hospitalized. As a type 1 the ONLY diet that works for ME is ultra low carb but I appreciate it doesn’t work for everyone nor does everyone like it. It’s all about our personal choices and more importantly our personal goals.

 

[Bluetit1802]

I started cutting carbs whilst waiting for my meter etc to arrive. Once I had my meter I could see that I hadn't done enough carb cutting. Initially I wasn't ready to cut all carbs so I allowed myself a sandwich thin at lunchtime. That has now been replaced with low carb soup. I was convinced that I wanted to low carb - I just needed a few weeks to get where I wanted to be - assisted by testing.

Surely we need to test to inform our meal choices and to see that what we are doing is working for us? I for one wouldn't want to wait 3 months to find out!

This was something similar to myself. I joined this forum but dug my heels in about testing. People on here tried to push me but it still took me nearly 3 months to obtain a meter. My concern was simply a fear of becoming obsessed with it. Once I took the plunge I was literally gobsmacked about what some of my so-called low carb healthy choices were doing to my levels, and it was little wonder my HbA1c had barely changed, but by heck my next one after 2 months of testing dropped me out of the diabetic range where I have remained ever since. No way could I have done that without testing. I eat to my meter, have never taken any meds, and still test several times a day. Obsessed? Yes ..... but in my case 100% worth it. It is my main motivation. The HbA1c every so often means very little to me.

 

[LittleGreyCat]

I am concerned about the dangers of incorrect advice and especially dietary advice, to new people, who post and, in the first days and week get well meaning but, ultimately, incorrect advice. I think posters need to hold back more and only address diet when the person has got over the initial shock and stabilized, even type 2's. There is no way we know all the possible medical issues someone has from their first week of posting. Often advice is given when we dont even know if they are on medication or the type they are.

<snip>

I think that this is the wrong approach, and enormously negative. I am not surprised that there has been a degree of push back.
Could you not, perhaps, have asked that posters responding to "newbies":

1. Always remember to ask for details of diabetes type, any medication, any advice from their health care team before offering specific advice. Ask about their issues, what they want from the forum.
2. Always remember to include messages of support for new posters. Many come here just for emotional support initially.
3. Always be especially careful if discussing a type of diabetes different from your own; the best advice is based on your own experience.

You appear to be telling people what not to do and blaming people for giving wrong advice in a very negative way.

The message could have been "please try and give more emotional support" which is a very positive way to approach it.

 

[Scott-C]

at the time of the Carb Wars

Brilliant, Carb Wars sounds like the plot of a Mad Max movie - I'm imagining the two camps racing round in the desert, flinging lamb chops and baguettes at each other!

 

[Boo1979]

Brilliant, Carb Wars sounds like the plot of a Mad Max movie - I'm imagining the two camps racing round in the desert, flinging lamb chops and baguettes at each other!

Lol were probably on Mad Max 4 now - same underlying plot, slightly different storyline!

 

[librarising]

Brilliant, Carb Wars sounds like the plot of a Mad Max movie - I'm imagining the two camps racing round in the desert, flinging lamb chops and baguettes at each other!

I'm happy to play myself, if Brad Pitt isn't available

 

[woodywhippet61]

Brilliant, Carb Wars sounds like the plot of a Mad Max movie - I'm imagining the two camps racing round in the desert, flinging lamb chops and baguettes at each other!

Hmm lamb chops v baguettes. Which side to chose.......... hmmm lamb chops might be small but have cut bones so can be sharp. Hmm baguettes would have to be stale.......... Nope I'm going for lamb chops.

 

[archersuz]

Lamb chop in a baguette? Double whammy!