Don’t you just hate it when people think diabetes is easy

[TypeZero.]

My neighbour and older sister literally have no idea what a life with T1D means even though I have explained it multiple times.

Don’t you guys just hate it when people don’t want to understand. They think I’m being over the top by carb counting and prebolusing for meals. They refuse to understand that everything practically has carbs in it and my body makes no insulin at all so every bit of stuff I eat makes my BG rise and even without food my BG rises due to dawn effect, stress, illness and so forth.

Is it just me that experienced this with people around me?


Edited by moderator to remove inappropriate content

 

[DavidGrahamJones]

It's only their ignorance that is a problem. I don't think there's an easy way of telling anyone. A very close friend of mine was so convinced that 'there was nothing to it' based on his next door neighbour's daughter who was type I and JUST injected insulin x times a day.

It's a shame when people don't listen or refuse to listen. I'm lucky in that most of my friends are very well aware that there is stuff they don't know and are happy to learn. Most of them are very happy to cook low carb if I'm a guest and when eating out will consider my low carb approach in choosing a place to eat.

Try not to let it worry you, other people's ignorance is their problem. They'd be in for a shock if they should develop diabetes.

 

[ArtemisBow]

To be fair, how much do you know about lupus? Or cystic fibrosis? Or living with any other condition?

10 years ago I wouldn’t have had a clue what diabetes involved. I wouldn’t have said it was easy, but I really wouldn’t have understood it as it didn’t impact me. That’s not to say people can’t be educated, but usually you only start to learn about things like diabetes when it impacts you or someone close.

 

[Juicyj]

Personally I don’t expect anyone to have a clue about my diabetes - even my consultant, simply because they don’t live with it. My neighbour still thinks I need sugar when I go high, which is fine because we can laugh about it. I take every ‘misinformed’ comment with a pinch of salt and correct when I can but don’t sweat the small stuff.

 

[Tophat1900]

Personally I don’t expect anyone to have a clue about my diabetes - even my consultant, simply because they don’t live with it. My neighbour still thinks I need sugar when I go high, which is fine because we can laugh about it. I take every ‘misinformed’ comment with a pinch of salt and correct when I can but don’t sweat the small stuff.

My thoughts exactly. I don't think anyone can fully understand a condition (Regardless of what it is) until they live with it. This would include myself for conditions I don't live with or know anything about.

 

[Daibell]

I've always found others very receptive to the difficulties of the condition and do listen to what I say about it.

 

[VashtiB]

I think it's a bit of walking in someone's shoes. I can't honestly say that I understand how hard it is to be a type 1- I'm always impressed though when I hear about those being diagnosed very young g- I can slightly imagine how challenging that must be for then parents and for a kid growing up and having to always consider what they are eating.

I think that is one of the strengths of this forum. We who have this condition are motivated to find out more and we also understand how people can feel with this condition. That combined with the number on here means that we find others who do understand whatever our particular difficulty is.

Diabetes is often misunderstood but my guess is that that is also true of other conditions. I think the best thing is to be respectful and listen to those with a condition and learn from them. I have learned a lot here and I am very grateful for those who have helped me learn.

 

[NicoleC1971]

I am uncomfortable with adopting any kind of victim status as a type 1 and would say that one thing having this has taught me is to try and understand other people's health conditions before making any assumptions about how 'easy' they might have it.
Having an invisible condition, other than my visible fsl, is great and I am happy to explain to anyone who is curiois about it and it is nice when people are surprised to hear that I am diabetic and to correct some of their strange beliefs e.g. I couldn't do injections/blood tests etc. etc.
Most people are very much NOT interested. So what?

 

[Brunneria]

To be fair, how much do you know about lupus? Or cystic fibrosis? Or living with any other condition?

10 years ago I wouldn’t have had a clue what diabetes involved. I wouldn’t have said it was easy, but I really wouldn’t have understood it as it didn’t impact me. That’s not to say people can’t be educated, but usually you only start to learn about things like diabetes when it impacts you or someone close.

Absolutely!

the moment someone starts claiming that their (insert medical condition of choice) is better/worse/more entitled to sympathy than someone else then they are instantly doing two things:
- showing their ignorance (there’s ALWAYS someone worse off than them)
- playing victim head-games

(And yes, I’ve played both those games. Still do, sometimes. And no, I am not proud of myself when I realise what I’m doing)

 

[TypeZero.]

To be fair, how much do you know about lupus? Or cystic fibrosis? Or living with any other condition?

10 years ago I wouldn’t have had a clue what diabetes involved. I wouldn’t have said it was easy, but I really wouldn’t have understood it as it didn’t impact me. That’s not to say people can’t be educated, but usually you only start to learn about things like diabetes when it impacts you or someone close.

But they don’t need to know the cause of my disease, they just need to know how I will manage it and I repeated myself like a million times.

“My body produces no insulin”
“Everything from food, stress to exercise affects my blood glucose significantly”
“I use insulin and need to match it to my carb intake so I have to count carbs and monitor my blood glucose very closely”

Is this not enough for someone to understand my treatment plan? It’s literally 3 lines, I’m not giving a whole medical history giving details about the antibodies involved and the risk factors for T1D, am I? They think I can just eat whatever I want and occasionally check my BG to see if I need medication. I repetitively tell them I have to make calculations but I feel like it goes through one ear and out the other.

The word “diabetes” is strongly correlated with unhealthy lifestyles so they think eating a salad and doing exercise will make it go away. They think that I’m supposed to have a reactive approach where you take insulin after your BG has risen significantly rather than a proactive approach when you inject before a meal. Then they get annoyed because they think I’m exaggerating to get attention

 

[ert]

But they don’t need to know the cause of my disease, they just need to know how I will manage it and I repeated myself like a million times.

“My body produces no insulin”
“Everything from food, stress to exercise affects my blood glucose significantly”
“I use insulin and need to match it to my carb intake so I have to count carbs and monitor my blood glucose very closely”

Is this not enough for someone to understand my treatment plan? It’s literally 3 lines, I’m not giving a whole medical history giving details about the antibodies involved and the risk factors for T1D, am I? They think I can just eat whatever I want and occasionally check my BG to see if I need medication. I repetitively tell them I have to make calculations but I feel like it goes through one ear and out the other.

The word “diabetes” is strongly correlated with unhealthy lifestyles so they think eating a salad and doing exercise will make it go away. They think that I’m supposed to have a reactive approach where you take insulin after your BG has risen significantly rather than a proactive approach when you inject before a meal. Then they get annoyed because they think I’m exaggerating to get attention

It's difficult to walk in someone else's shoes. My colleague, who is well-meaning, suggested that I talk to a type 1 person she knows at church for some tips as she finds it all very simple to manage. I asked her to ask said lady what it was really like to be type 1, as most people will just be polite when asked, in general, how things are. Needless to say, I won on that point.

 

[KK123]

Oh yes, I definitely do just hate it when people think 'diabetes' affects everybody exactly the same as though we were all the same person because we share a condition and therefore 'don't want to understand'. Bit like thinking everyone who shares the same age is the same I guess. That's the problem, people read all about this and that and think they are experts despite having NO personal experience of the subject in hand.

 

[Tophat1900]

But they don’t need to know the cause of my disease, they just need to know how I will manage it and I repeated myself like a million times.

“My body produces no insulin”
“Everything from food, stress to exercise affects my blood glucose significantly”
“I use insulin and need to match it to my carb intake so I have to count carbs and monitor my blood glucose very closely”

Is this not enough for someone to understand my treatment plan? It’s literally 3 lines, I’m not giving a whole medical history giving details about the antibodies involved and the risk factors for T1D, am I? They think I can just eat whatever I want and occasionally check my BG to see if I need medication. I repetitively tell them I have to make calculations but I feel like it goes through one ear and out the other.

The word “diabetes” is strongly correlated with unhealthy lifestyles so they think eating a salad and doing exercise will make it go away. They think that I’m supposed to have a reactive approach where you take insulin after your BG has risen significantly rather than a proactive approach when you inject before a meal. Then they get annoyed because they think I’m exaggerating to get attention

It seems from my own perspective that family are the ones who least understand the needs when it comes to management. That's just my opinion though.

 

[Tophat1900]

Oh yes, I definitely do just hate it when people think 'diabetes' affects everybody exactly the same as though we were all the same person because we share a condition and therefore 'don't want to understand'. Bit like thinking everyone who shares the same age is the same I guess. That's the problem, people read all about this and that and think they are experts despite having NO personal experience of the subject in hand.

Quite true... life isn't easy for anyone, but some of the stuff I've been told is just broken record material and it just doesn't work for me, but there seems to be a refusal to accept that (regardless of how many times I tell someone that doesn't work for me and why it doesn't). Especially from HCP's.... not blaming them, they are taught what to do and recommend for advice,but there are those who simply don't listen to the patient. It goes in one ear and out the other, dismissed, and this comes from other people too, but that's life.... when it comes to management, I find I just gotta do what I gotta do.

 

[kev-w]

I remember as a kid we had a lad in Cub Scouts who was a T1, and on camp iIrc there were a few dramas with him on hikes and stuff (1970's insulins), all I knew was 'he needs injections' and was quiet and at secondary school a mate had a T1 friend (we've been mates a long long time now ) who didn't play sport and was another quiet lad who 'needed injections' but again I didn't know about any of the other discipline's a T1 needs to be working on, and as my son says he doesn't have a clue and I brought him up, and my mates say the same sort of thing, my gripe has always been the ignorance of the types of diabetes, I've had the classic 'ooh you don't look fat' line a fair few times and it's not the perceived insult that offends but the ignorance causing it.

My latest gripe is when you clock someone eyeing your libre in puzzlement and wants to ask about it but stares then points it out to someone else but they get the evil stare.

It's a very hard illness to explain to a third party in any detail, when I was diagnosed I had juvenile onset diabetes (T1) and as I was classed as 'non conformist' (it was on medical notes ) they sent me to the 'mature onset' clinic for educational purposes which was all overweight t2's in wheelchairs with parts of their legs missing.

Anyway, 30 odd years in and I just think 'stuff them'

 

[Tophat1900]

I remember as a kid we had a lad in Cub Scouts who was a T1, and on camp iIrc there were a few dramas with him on hikes and stuff (1970's insulins), all I knew was 'he needs injections' and was quiet and at secondary school a mate had a T1 friend (we've been mates a long long time now ) who didn't play sport and was another quiet lad who 'needed injections' but again I didn't know about any of the other discipline's a T1 needs to be working on, and as my son says he doesn't have a clue and I brought him up, and my mates say the same sort of thing, my gripe has always been the ignorance of the types of diabetes, I've had the classic 'ooh you don't look fat' line a fair few times and it's not the perceived insult that offends but the ignorance causing it.

My latest gripe is when you clock someone eyeing your libre in puzzlement and wants to ask about it but stares then points it out to someone else but they get the evil stare.

It's a very hard illness to explain to a third party in any detail, when I was diagnosed I had juvenile onset diabetes (T1) and as I was classed as 'non conformist' (it was on medical notes ) they sent me to the 'mature onset' clinic for educational purposes which was all overweight t2's in wheelchairs with parts of their legs missing.

Anyway, 30 odd years in and I just think 'stuff them'

Non conformist.... you rebel!

 

[Mbaker]

My life long friends Dad was Type 1 and his Mum Type 2, they were effectively second parents to me. As a teenager I spent just as much time around his house as mine, yet I did not understand either condition his parents had; I recall my other friends Mother mentioned something about "blood being sweet" once. So I was surrounded by diabetes, but did not understand the condition for around 35 years. I was not wilfully being ignorant, but can't explain why I did not enquire more. I remember my friends Dad missing insulin shots, this bringing on dementia, it is brings me to tears now to know this was preventable.

Gareth Thomas, the retired international rugby star, has managed to educate millions regarding living with HIV, due to his sports profile, and appearing to get on the media at will. For us mortals who would like more education of the general public, there are less chances to get the message out.....but there is a chance still.

If you could co-op someone like Theresa May into campaigning that could be a start - the best politicians I feel are those who had had power, step back and then tell more truths than follow party lines; or maybe 3 or 4 Type 1's write into somewhere like GM TV to get on visually, there might be shot at some general education - I really think this would prick media interest, which could go viral, with maybe an awareness day every year just for Type 1's especially using social media.

 

[kev-w]

If you could co-op someone like Theresa May into campaigning that could be a start - the best politicians I feel are those who had had power, step back and then tell more truths than follow party lines; or maybe 3 or 4 Type 1's write into somewhere like GM TV to get on visually, there might be shot at some general education - I really think this would prick media interest, which could go viral, with maybe an awareness day every year just for Type 1's especially using social media.

Ah but a younger T1 would frown upon her being extolled as a T1 diabetes example as their condition management will differ from hers with her LADA diagnosis and the slower onset of the illness but that's the problem for T1's, look on this site for example and the many different ways of T1 management, pumps, mdi and even folk on the older analogue insulins (and lets not forget cinnamon ) as there's not one size fits all unfortunately...

I do dig the frustration of feeling the need to explain but in my own experience avoid it as it only generates more ignorance/confusion and doesn't help with management of blood sugars which is after all the goal we're all aiming at whilst living our lives in the many different ways we do.

 

[JohnEGreen]

As long as they are not burning down communication masts thinking they cause diabetes I don't really care what the ignorant think.

After spending years trying to explain Myasthenia Gravis to people including some doctors nurses and heath care workers I realised what a waste of time it was and gave up doing it unless really provoked into it. I have now the same attitude to diabetes I have many T1's and T2's in my family so those who count already have a good understanding of it.

 

[Mbaker]

Ah but a younger T1 would frown upon her being extolled as a T1 diabetes example as their condition management will differ from hers with her LADA diagnosis and the slower onset of the illness but that's the problem for T1's, look on this site for example and the many different ways of T1 management, pumps, mdi and even folk on the older analogue insulins (and lets not forget cinnamon ) as there's not one size fits all unfortunately...

I do dig the frustration of feeling the need to explain but in my own experience avoid it as it only generates more ignorance/confusion and doesn't help with management of blood sugars which is after all the goal we're all aiming at whilst living our lives in the many different ways we do.

I don't thinks Theresa May would mind me saying she is not perhaps the "coolest" example (especially after that on stage dance at her party conference ). Whilst not a perfect fit, she understands the condition and can get on any media she wants at the drop of a hat; she can also dispel myths about cause and capabilities as I remember there were times when certain elements tried to point score against her condition.

There was a Rugby Type 1 who made an impact in the media, but the golden ticket would be an underlying basic understanding, so that T1's could for example feel comfortable injecting at restaurants without being mistaken for using anti-social drugs. Just some ideas.