Misconceptions re Type 1

[Purls of Wisdom]

Someone mentioned about a well rehearsed speech for clearing misconceptions regarding Type 1.

I would love to learn a thing or two to get some unwelcome, unkind and annoying well wishers off my back. So, can the real hero, please come forward and share their wisdom?

Much appreciated.

 

[trophywench]

Not me - but what possible misconceptions can there be about an auto immune condition? Hence if anyone suggested I'd caused it myself or brought it on myself somehow I'd just put a mega puzzled look on my face and ask them what exactly they do not understand about auto immune conditions such as Type One diabetes, since it's quite obvious to me that they don't understand - and wait in silence for THEM to answer ME. Then laugh at them and walk away and not waste any more of MY time.

 

[DaveB]

Hi. I might also add that childhood T1 appears to be almost always an auto-immune condition which you can do nothing to avoid. Later in life T1 can be caused by viruses amongst other things, as I believe mine was, and these also come out of the blue and can't be avoided. Eating the wrong food or too much has little to do with T1 but the 'right' diet can sometimes help reduce the absolute level of meds (e.g. insulin) needed for treatment. Basically T1 isn't your fault.

 

[helli]

Hi. I might also add that childhood T1 appears to be almost always an auto-immune condition which you can do nothing to avoid. Later in life T1 can be caused by viruses amongst other things, as I believe mine was, and these also come out of the blue and can't be avoided. Eating the wrong food or too much has little to do with T1 but the 'right' diet can sometimes help reduce the absolute level of meds (e.g. insulin) needed for treatment. Basically T1 isn't your fault.

Whether caused by virus or not, my understanding is that Type 1 is always autoimmune. A virus is unlikely to kill off all your beta cells and never let them regrow.

Preconceptions I have come across are
- ”Can you eat that?” To which I reply “I can eat whatever I want as long as I dose my insulin correctly.”
- “Type 1 is a childhood disease”. To which I reply, “More than half the people with Type 1 were diagnosed over the age of twenty”.
- “You can’t do that with diabetes.” My response is “I can do pretty much what I want, travel where I want, eat what I want, … Would you tell an athlete they can’t compete or a politician they can’t run a country or a pop star they can’t tour because they have diabetes? Because there are people with Type 1 who have done all these things”
- “Your foot will fall off” (yes, I have been told this). I always tell people “The chance of any complications due to diabetes are greatly reduced if I manage my blood sugar level.”
- “You can’t inject here some people may be afraid of needles.” I calmly respond “They don’t have to look but I have to have insulin. And no, I am not going to a dirty toilet.”
- “Oh, Type 1. Is that the serious one?” My response is “ All types of diabetes are serious”

Sorry, I don’t have any great speech and don’t think I am the sort that would give it. But I am happy to quash ignorance.

 

[Robin]

The problem comes when you trot out your pre-prepared speech, and it falls on deaf ears. I once explained all about what I could eat, and how I organised my insulin to cope, and was met with the answer 'Well, that’s what you’ve convinced yourself, anyway'

edit; Oh and those are always the people who know someone who’s got Diabetes MUCH worse than you have.

 

[MikeyBikey]

edit; Oh and those are always the people who know someone who’s got Diabetes MUCH worse than you have.

I recall someone telling me they only had "a touch of diabetes" despite running continually high BGs and starting to develop complications!

Also a prize twit telling me I must have been a fat child. Obviously a Daily Fail reader!

 

[Sally71]

I never mind people asking questions if they are genuinely interested and trying to understand. But some people don’t want to be told and you are basically wasting your breath with them.
Daughter’s dance teacher occasionally gives out small chocolate treats to her class, and always used to ask if she could have one. Didn’t argue when I said yes, and eventually worked out that i always said yes and stopped asking. Some people accept it when you say she can eat anything as long as she gets the insulin dose right, some just don’t have a clue and don’t seem to want to understand. At primary school, kids used to bring sweets in to share on their birthdays. The annoying kids wouldn’t share with my daughter because “you can’t eat them” and would not listen when she tried to explain that actually she could. Hats off to a 10 year old lad who actually made the effort to ask the teacher what could he bring in that daughter could share too!

Know it all teachers were the worst. Ruined a Christmas party because they wouldn’t let her eat biscuits when she’d already taken the insulin for it. No amount of explaining seemed to work, teacher just kept saying “but it was a huge pile of biscuits”. Which isn’t much good for any child but they didn’t stop the others having them! French teacher was bringing in French food for the kids to try. I went to see her to ask for an idea of what she was bringing so I could help daughter get insulin dose right so that she could eat them. Well you’d have thought I’d used a swear word every time I said “insulin” from the teacher’s reaction and she insisted on my daughter’s class getting all the cheeses and the other class getting all the cakes and pastries. Which is exactly what I was trying to avoid, no reason they couldn’t all have tried everything. I wish I’d had the nerve to say something like “when you’ve been to as many hospital appointments as we have, and spoken to the consultant about these things, then you can tell me what to do”. But it probably wouldn’t have helped.

My favourite one is “I don’t know how you do that, I couldn’t” when watching daughter inject or finger prick. Umm well it’s not as if we have a choice is it, if you were faced with the alternative of certain death I’m pretty sure you’d very quickly realise you could cope!

 

[johntheterrier]

I get fed up of trying to explain Diabetes to non- diabetics, I give the briefest explanation I can and then move on. But if I meet a fellow T1D I'll talk to them all night about it .

 

[Purls of Wisdom]

I recall someone telling me they only had "a touch of diabetes" despite running continually high BGs and starting to develop complications!

Also a prize twit telling me I must have been a fat child. Obviously a Daily Fail reader!

You made me laugh out loud!

 

[Purls of Wisdom]

I never mind people asking questions if they are genuinely interested and trying to understand. But some people don’t want to be told and you are basically wasting your breath with them.
Daughter’s dance teacher occasionally gives out small chocolate treats to her class, and always used to ask if she could have one. Didn’t argue when I said yes, and eventually worked out that i always said yes and stopped asking. Some people accept it when you say she can eat anything as long as she gets the insulin dose right, some just don’t have a clue and don’t seem to want to understand. At primary school, kids used to bring sweets in to share on their birthdays. The annoying kids wouldn’t share with my daughter because “you can’t eat them” and would not listen when she tried to explain that actually she could. Hats off to a 10 year old lad who actually made the effort to ask the teacher what could he bring in that daughter could share too!

Know it all teachers were the worst. Ruined a Christmas party because they wouldn’t let her eat biscuits when she’d already taken the insulin for it. No amount of explaining seemed to work, teacher just kept saying “but it was a huge pile of biscuits”. Which isn’t much good for any child but they didn’t stop the others having them! French teacher was bringing in French food for the kids to try. I went to see her to ask for an idea of what she was bringing so I could help daughter get insulin dose right so that she could eat them. Well you’d have thought I’d used a swear word every time I said “insulin” from the teacher’s reaction and she insisted on my daughter’s class getting all the cheeses and the other class getting all the cakes and pastries. Which is exactly what I was trying to avoid, no reason they couldn’t all have tried everything. I wish I’d had the nerve to say something like “when you’ve been to as many hospital appointments as we have, and spoken to the consultant about these things, then you can tell me what to do”. But it probably wouldn’t have helped.

My favourite one is “I don’t know how you do that, I couldn’t” when watching daughter inject or finger prick. Umm well it’s not as if we have a choice is it, if you were faced with the alternative of certain death I’m pretty sure you’d very quickly realise you could cope!

I would be rich if I were given £1 everytime someone said that to me. Honestly people can be so ignorant.

 

[Purls of Wisdom]

I never mind people asking questions if they are genuinely interested and trying to understand. But some people don’t want to be told and you are basically wasting your breath with them.
Daughter’s dance teacher occasionally gives out small chocolate treats to her class, and always used to ask if she could have one. Didn’t argue when I said yes, and eventually worked out that i always said yes and stopped asking. Some people accept it when you say she can eat anything as long as she gets the insulin dose right, some just don’t have a clue and don’t seem to want to understand. At primary school, kids used to bring sweets in to share on their birthdays. The annoying kids wouldn’t share with my daughter because “you can’t eat them” and would not listen when she tried to explain that actually she could. Hats off to a 10 year old lad who actually made the effort to ask the teacher what could he bring in that daughter could share too!

Know it all teachers were the worst. Ruined a Christmas party because they wouldn’t let her eat biscuits when she’d already taken the insulin for it. No amount of explaining seemed to work, teacher just kept saying “but it was a huge pile of biscuits”. Which isn’t much good for any child but they didn’t stop the others having them! French teacher was bringing in French food for the kids to try. I went to see her to ask for an idea of what she was bringing so I could help daughter get insulin dose right so that she could eat them. Well you’d have thought I’d used a swear word every time I said “insulin” from the teacher’s reaction and she insisted on my daughter’s class getting all the cheeses and the other class getting all the cakes and pastries. Which is exactly what I was trying to avoid, no reason they couldn’t all have tried everything. I wish I’d had the nerve to say something like “when you’ve been to as many hospital appointments as we have, and spoken to the consultant about these things, then you can tell me what to do”. But it probably wouldn’t have helped.

My favourite one is “I don’t know how you do that, I couldn’t” when watching daughter inject or finger prick. Umm well it’s not as if we have a choice is it, if you were faced with the alternative of certain death I’m pretty sure you’d very quickly realise you could cope!

I myself have not reached the stage of altering or adjusting my insulin yet, so feel inadequate to pass a remark. I ve been pestered with, " you must drink 2tbsps of EVOO. Go for walks. Nothing else is going to help. You can reverse your diabetes. It is possible, you know. And the best one till date is my ____ eats everything."

None of this advice givers are Type1 and know nothing about it and the worse is what ever little they do know; it is untrue.

I wish people are better educated or keep their mouth tightly shut. Dealing with diabetes is hard as it is, listening to idiotic comments makes it even harder. So thank you but no thank you.

 

[Leadinglights]

I myself have not reached the stage of altering or adjusting my insulin yet, so feel inadequate to pass a remark. I ve been pestered with, " you must drink 2tbsps of EVOO. Go for walks. Nothing else is going to help. You can reverse your diabetes. It is possible, you know. And the best one till date is my ____ eats everything."

None of this advice givers are Type1 and know nothing about it and the worse is what ever little they do know; it is untrue.

I wish people are better educated or keep their mouth tightly shut. Dealing with diabetes is hard as it is, listening to idiotic comments makes it even harder. So thank you but no thank you.

What you have just said implies you are Type 1 but your profile says Type 2 or are you waiting for a confirmation of type?

 

[rayray119]

Oh I've had all sorts in the 10 months I've been diagnosed.

"You're so skinny how do you have diabetes" that's nor how it works. My immune system atecked the cells in my pancus that produce insulin nothing to do with weight well expect for the fact I lost alot due to undiscovered diabetes.


"Don't you get diabetes by eating too Manny sweets" no you dont

"You probably going to say no to these aren't you"(handing round biscuits" "I'm so sorry"(when I did actually turn them down because I didn't happen to want one" "I could" "you could but you'd have not have something else" "no I would just have to inject" then followed by someone else saying "oh I've been meaning to ask you i need to get some prediabetic chocolate for my day where's the best place"

Doing a blood test in unveriisal credit meeting because I felt hypo to which I got "oh are you still trying to get your blood sugars under control (the worst part Is she had told me previously that her newphew was on insulin" then put into my notes that I was having blood sugar problems

Currently what I'm getting from people about my current health problems is "is all to do with diabetes" even some doctors are blaming it on that even with stardard illnesses like a cold if I say to someone I'm not feeling the best I get "is the diabetes" em no I just have a cold.


I should probably stop there

 

[JJay]

Well, I'm coming to the conclusion that I'm either very lucky or very scary! Because I can honestly say that in 27 years no-one has ever said anything like that to me.

People's ignorance of the condition isn't their fault - why should they be expected to know about something that doesn't affect them? So, I don't have a speech. No benefit to be gained from making others feel bad, or stupid. I answer questions truthfully - that's all.

 

[Robin]

Well, I'm coming to the conclusion that I'm either very lucky or very scary! Because I can honestly say that in 27 years no-one has ever said anything like that to me.

People's ignorance of the condition isn't their fault - why should they be expected to know about something that doesn't affect them? So, I don't have a speech. No benefit to be gained from making others feel bad, or stupid. I answer questions truthfully - that's all.

I assure you, I don’t 'trot out my prepared speech' to make people feel bad or stupid. It’s just that I find it helps to have given some previous thought to things that might help people understand.
Only the other day I had to explain to an optician, who said to me 'you must be Type 2 because of your age' He’d made an incorrect assumption that I felt I needed to explain. Similarly, my dentist was telling me I should use Bitter Melon, and I felt I had to check if she knew the difference between the various types of diabetes. Both times, the explanation was welcomed, and prompted further questions, which is fine, I dont expect non-Ds to know very much about it.
The point I was making, was how annoying it is when you've gently explained, and somebody obviously feels they know better.

 

[rayray119]

The thing that actually irrates me is when people think they know what I should be doing about my blood sugar me then me. I had that off someone before I tried to explain I know what I was doing.

 

[JJay]

I assure you, I don’t 'trot out my prepared speech' to make people feel bad or stupid. It’s just that I find it helps to have given some previous thought to things that might help people understand.
Only the other day I had to explain to an optician, who said to me 'you must be Type 2 because of your age' He’d made an incorrect assumption that I felt I needed to explain. Similarly, my dentist was telling me I should use Bitter Melon, and I felt I had to check if she knew the difference between the various types of diabetes. Both times, the explanation was welcomed, and prompted further questions, which is fine, I dont expect non-Ds to know very much about it.
The point I was making, was how annoying it is when you've gently explained, and somebody obviously feels they know better.

@Robin Sorry, no offence intended. As I said, I'm obviously very lucky not to have had silly remarks made to me, but as I have a brother and my best friend's partner who are both T1, and worked for years in a department with 3 T1s out of 30 or so staff, I suppose there hasn't been a lot of ignorance in the circles I've moved in!

Well done you for making the effort to explain and yes, I would find it extremely annoying to be contradicted in that way.

 

[Robin]

No offence taken!

 

[Sally71]

Yes it’s not the fact that people ask questions is it, after all none of us knew much about it before we had to deal with it every day. It’s when you try to explain and people either don’t listen or still think they know better than you do, just because their aunt’s neighbour’s friend has got type 2. Or like some of the idiots who were in my daughter’s year at school, they will believe whatever they’ve read on the internet or seen on some silly TV drama over the person who has actually had to live with the condition for nearly 10 years.

 

[rayray119]

I also had the some miscompiections before being diagnosed even when I was in hospital I didn't know I would need to be insulin the rest of life I couldn't wait to get out hospital so the needles would stop(oh the irony)(I thought they were just giving me insulin to get my blood sugar down and I'll be good) Thought it was also about suger so questioned when they gave me ice cream for dessert but different bet a eyelid when at a big roast dinner heaps of protato.(until the diabetic nurse told me to limit carbs for now while I was getting my blood sugar down)


I also used to think one type of diabetes made your blood sugar to too low(there was kid in my primary school with diabetes that on more one ocusion would pass out in assemblys which may have been where that came from however I know understand them to have been bad hypos') and the other too high.