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Diabetes etiquette

muuranker just pointed out this handy diabetes etiquette guide for people who don't have diabetes. Most of the points on the guide appear to be more generally applicable to other illnesses.
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That is excellent, thanks !

That's awesome!

Definitely gives me a much better idea of how to treat people with diabetes, much appreciated.

There should be one of those for lots of illnesses!

Re: That's awesome!

Don't consider memorising lists of do's and don'ts for different diseases and disabilities, A basic courtesy and asking yourself "How would I feel if..." will cope with most situations, eg, someone getting out of a chair using sticks or crutches looks hellishly awkward but unless they ask for help leave them to it - hovering next to them during the activity isn't usually appreciated either. ditto for any other activity.

The amount of help asked for depends more on the individual than the condition.

Re: That's awesome!

How about generalising the diabetes one and adding on your point about not assisting someone unless they ask you to:

1. Don't offer unsolicited advice about how to treat my condition.
2. Do realise and appreciate that living with my condition is hard work.
3. Don't tell me horror stories about your grandmother or other people with my condition you have heard about.
4. Don't look so horrified when I do something out of the ordinary as part of my treatment.
5. Do ask how you might be helpful.
6. Don't offer thoughtless reassurances.
7. Do be supportive of my efforts for self-care.
8. Don't try to assist me unless I ask you to.
9. Do offer your love and encouragement.

Re: That's awesome!

I think that's a good card, well written and helpful; thanks for posting it, Alex.

I also agree with the general point johnrw makes about not offering assistance unless asked.

FWIW, an ME list would run along similar lines:

1. Don't offer unsolicited advice about how to treat my condition.
2. Do realise and appreciate that living with my condition is hard work.
3. Don't tell me horror stories about your grandmother or other people with my condition you have heard about.
4. Do ask how you might be helpful.
5. Don't offer thoughtless reassurances.
6. Do be supportive of my efforts for self-care [though in the case of ME this more usually means making space for rests or stress/noise-free experiences, rather than offering to join in with exercise regimes].
7. Don't try to assist me unless I ask you to.
8. Do offer your love and encouragement.

There would also be several other smaller points, to do with not doing things "as a nice surprise" (eg dropping in for an unannounced visit); acting immediately on a hint that spoons are running out; and, most frequently tricky with people who care for you, NOT sending me information about wonder treatments for ME. It would be truly astounding if there was a treatment out there I hadn't already heard of, and if I'm not already doing it then it's for a good reason!

Oh, and not being judgemental when the brainfog means that I struggle to find a word, or completely forget really obvious things, or can't type properly, or can't make a simple decision (recent exchange between Griff and me: "Would you like some cake?" "I don't know!"). The loss of one's mental acuity can be extremely frustrating. Best thing often is to join in the person with ME in laughing at themselves ;) - and then elegantly shift the focus of the discussion.

I'll bear the points on the card in mind next time I am around someone with diabetes. They all do seem obvious when you think them through, but one doesn't always think through, or research, all the possible conditions the people around one might have. I guess it's trickier to understand a chronic condition when you don't have close friends or family who live with it.

Mmmmm, cake....

Extra points duly noted. One of the few times you sounded slightly annoyed was when you were talking about a supposed miracle cure somebody had recommended to you.

My default assumption in the absence of further guidance would be cake=yes.

Re: Mmmmm, cake....

That's Griff's default assumption, too :)

You don't need extra points on dealing with someone with ME. You're just downright good at it by instinct.

Re: Mmmmm, cake....

Another dodgy one is being told about supposed wonder treatments and then if you say 'well actually I'm trying something at the moment' non committally or 'not for me right now thank you', they say 'but don't you *want* to get better'? !!!!@#$%!!!

This is not a recommended technique.

There are times I say to myself very patiently 'don't thump the idiot, you'll just damage yourself'.

Re: Mmmmm, cake....

There are times I say to myself very patiently 'don't thump the idiot, you'll just damage yourself'.

Some of them, I think it would be worth the risk. >:(

Re: That's awesome!

It's good to hear that I'm not the only one who gets that decision-making problem. (Though, you know, I would rather you didn't get that, if you see what I mean.) People just don't understand it (with a couple of impressive exceptions). I haven't had that very badly for some months, but it is very difficult.

Re: That's awesome!

alex_holden and the_magician saw this in action when they cooked supper for me in Belfast. "Do you want some cheese on it?" "I don't know!" They coped brilliantly.

It's one of the few symptoms which I have to remind myself to laugh at. I guess usually by the time it's appeared I'm pretty rough so I'm too fuzzy to find many things funny. There were one or two moments in Ireland when I was too mussed up even to giggle at the_magician's jokes.

Always good to have other people who understand things, isn't it! :) Have you found Brainfog yet?

Re: That's awesome!

My worst instance, when the ME was hugely worse than usual as a result of an enormous amount of stress (I was just going in to a homeless hostel for a short period, so you can see what I mean — life is much better now!) when a friend took me to get some food. She asked me what sort of bread I liked and I was paralysed, I couldn't decide and almost freaked out in the shop. Fortunately, my friend knew what was happening and had sense, and she just got me bread.

I haven't found Brainfog yet; I shall have to have a look at it when I feel a little less fogged. :)

Re: That's awesome!

Sounds like a good friend :)

Have we succeeded in totally hijacking Alex's post, do you think? ;)

Hope you like Brainfog - it tends to suit sensible, intelligent, cheerful people who don't make a huge big hairy deal out of having ME.

Re: That's awesome!

Yep, a damn good friend. :)

I'm not sure I would ever describe myself as sensible, but I am certainly hairy enough that I won't make a big hairy deal out of having ME. :)

It does look interesting. Next time I'm online I shall properly explore it.

Re: That's awesome!

I don't know if we have succeeded in hijacking it, but I think we're giving it a damn good try. :)

Re: That's awesome!

Hijack away, I'm enjoying the conversation! ;)

Re: That's awesome!

*waves* :D

Re: That's awesome!

*waves too* ;D

Re: That's awesome!

Of course, it has to be said that alex_holden and the_magician are awesome chaps.

Re: That's awesome!

They are, both, separately and as band members, and in every way, completely and utterly awesome :D

Re: That's awesome!

*blushes*

You and tanngrisnir are awesome too! :)

Re: That's awesome!

I know :) Good, innit :)

Re: That's awesome!

Now *I'm* blushing!

Re: That's awesome!

I do this too, even when not having too bad a day. There was a period where I was almost continuously incapable of making a decision about myself when asked a question. My friends and family learned to work around it by offering me physical things and letting me touch them, if possible.. or by asking me one thing at a time, which only sometimes works.

Now it comes mostly in patches when I am particularly bad, or if I'm somewhere unfamiliar and under pressure (eg ordering in a busy coffee shop). Even very simple questions like 'tea or coffee' - and that is easy because I don't drink tea! - can collapse under pressure, even now with things somewhat more under control.

Re: That's awesome!

There was a period where I was almost continuously incapable of making a decision about myself when asked a question.

I went through a patch like that. Sitting in a bedroom where I was crashing until I could find somewhere to stay, I knew I needed food but I had no idea what to get and couldn't handle the prospect of actually going to the shop to make choices. I was lucky to have a friend at hand who has broadly similar tastes (a couple of notable exceptions aside) and the same basic diet (we're both vegan), so I asked her to just get me stuff she would eat, only more of it (I'm a little bigger than her). There are very few people who get it well enough that I could do that.

Only having one option at a time is often quite helpful. Fortunately, when it comes to coffee, my default is strong and black, so that is easy, and I can just blurt out Large Americano! when faced with a lot of options.

But I am not as bad as that at the moment.

Re: That's awesome!

I'm not sure that for a lot of people How would I feel if... would work, because it is very difficult to put yourself in the place of someone with any chronic illness unless you have had one. In particular, people who are basically helpful tend to have problems, from what I have seen, in grasping that having difficulty is not the same as needing help.

A generalised list based on this would probably do the trick. :)

Re: That's awesome!

In fact there are times that 'how would I feel' can be downright counterproductive for chronic illness, because one does learn to adjust, to acclimatize... the experience is simply not the same for someone who has not been there. For instance, the experience of waking up several times in the night sweating can be quite usual for someone with a chronic illness, as can be quite a lot of pain in various places as can be odd fevers as can be interesting body dysfunctions eg diarrhea, dislocation, rashes... these things, if experienced suddenly by an AB person to even half the degree some of us have them, could easily have them racing to a doctor and expecting to be cured/healed after a suitable time spent in the waiting room, not working around it and figuring out how to deal with the day's latest inconveniences and how to write a decent magazine article while in pain anyway...

Not negating 'how would I feel' as a valid technique that others probably would benefit from using more often, just adding a bit of a rider about adapting to conditions.

Re: That's awesome!

That is all so true. I get very odd looks sometimes when someone asks where it hurts and I say something like, Well, my right foot is pain-free just now. Having pain almost everywhere is something I tend to accept as being everyday. (Although, lately, I have had relatively little pain. Don't know why, but not knocking it.)

Re: That's awesome!

But how to _explain_ the difference between 'having difficulty' and 'less able therefore must need help'?

If I walk slowly, I don't need someone pushing me from behind to make me go faster, I just need to be let walk slowly. But sometimes people figure out the stupidest things to try to do...

There is both a fundamental urge to help people/care for people within us as a population (most of us, anyway!), and somehow also a need to stickybeak or to be seen to do something - that is where things fall down sometimes.

That's where you get people somehow calculating it would be helpful to grab and drag someone across the road 'to help them cross'... that they ought to be terribly jolly but insistent that a person with a chronic illness come to aerobics with them and exercise regularly 'because you'll get unfit with all that lying around, and besides it looks like i'm being supportive'. Because they often _do not_ get how we feel, and more importantly, how we function in our new or different-from-standard-issue bodies.

Re: That's awesome!

If I walk slowly, I don't need someone pushing me from behind to make me go faster, I just need to be let walk slowly. But sometimes people figure out the stupidest things to try to do...

Yep. Like a couple of people I can think of who seem to think if they walk a little bit faster and get a couple of metres ahead of me, I'll walk faster somehow. Grrr.

I once said fairly sourly to someone (who was not at all the target of the comment) that there was nothing worse than people with good intentions, and this is the sort of thing I meant. I still encounter people who really mean well but won't bloody listen when I am telling them that I don't need them to do X, but on the other hand Y might be useful.

Re: That's awesome!

Oh, and if you ever figure out a foolproof (and that really is the perfect word here) way of explaining it, do let me know. ;)

Re: That's awesome!

Still working on how to circumnavigate the fools :)

Waterproof I can do, but foolproof... *shakes head*
My grandfather and mother had diabetes, it's amazing how fast it becomes part of the background and you just get on with life.
So much so that it struck me as slightly odd to see the do's and don't written out that way.
My only concious behavioural modification is that I still usually carry a digestive biscuit and/or sugar just in case, and both died several years ago!
I would certainly hope to see this as a poster at my diabetes clinic one day lol. And it's true that they can be generalised, however I would particularly bear #01, #07 & #09 in mind when talking to a diabetic ;-)

There is nothing more annoying to someone who's been diabetic for years than to hear 'oh surely you shouldn't be eating that ~ it's full of sugar!' or worse 'all that sugar! It's no wonder you have diabetes!' The only time sugar has anything to do with diabetes is when a diabetic is hypoing.

And bearing #02 in mind ~ it is irritating to hear soembody say 'oh it could be worse...' No. No, it couldn't, not from my point of view.

And lastly #09 ~ there is no surer way to make a diabetic lie about their blood sugar results than if soemone constantly gets on their case about it.

diabetic for some 17 years
*why is the writing that I coded as small font look bigger than the rest of the writing??*
It comes out fine on my browser, so don't worry
But it could be worse... you could have some numpty trying to tell you how to deal with a condition you know a lot better than they do. ;)
But it could be worse... you could have some numpty trying to tell you how to deal with a condition you know a lot better than they do. ;)


Yes...they are called doctors ;-)
Ouch! ;)

(But so true...)
And I will second the comment about don't offer unsolicited advice - particularly for eating, but for management in general. That is a very good guideline.

As an adult, I resent someone I barely know telling me that I ought to go to bed earlier. Ought to eat wheatgrass sprouts/barley broth/whatever. Ought to be seeing a different kind of practitioner. Whatever. It didn't help, and just annoyed me that some of my functional time was spent in the company of this idiot.

I guess the difference I see about when people share helpful things with each other, perhaps helpful things that they have tried, is that they are *sharing*, not being judgemental or superior.

I got a good sense of this from the diabetes post.

BTW, most of the people I know who have diabetes can tolerate quite a lot more sugar than I can on a regular basis!

Thanks for posting this A.
That's pretty good. And as you say, pretty applicable across the board.