What did diabetes mean to you pre diagnosis?

[Flower]

Just interested as to what diabetes meant to you pre diagnosis. I know some have had it lifelong or since early childhood but what did the term mean to you before you were diagnosed?

Way before diagnosis I was told my granny died of diabetes so as a kid I thought it was something that definitely killed you and I knew my Uncle had to have sugar lumps when he felt funny( this was the 1970's pre dextrosol tablets etc). The only other thing we gave sugar lumps to were some donkeys that lived in a local field and I thought it was a very odd thing for an adult to need! Apart from that I had no knowledge of different types as the clinics at the hospital were Jod - juvenile onset - and Mod- Maturity onset. I thought the Mods were just grown up Jods! 🙄
This was all pre internet so my chances of learning much were limited!

 

[Matt Cycle]

It meant absolutely nothing to me. I'd gone through primary and most of secondary school and didn't know of anyone with diabetes and my secondary school was pretty big. We had a kid with coeliacs in our class though. None of my relatives or parent's friends had it either. I thought I was reasonably well read but I didn't do biology 'o' level so when it came to diagnosis and they were talking about the pancreas I didn't know what or where it was. Wasn't it a saint with a railway station near Kings Cross. 🙄

 

[Amigo]

Does this only relate to Type 1 Flower?

 

[Flower]

All are very welcome Amigo the more the merrier!

 

[Martin Canty]

Good question!!!

Being in my 50's on DX & having some level of medical training I understood what Diabetes was, that there was T1 & T2, also that T2's could be insulin dependent, that there were a few serious conditions such as Hypo/Hyper/DKA and that diabetic complications could lead to serious problems such as amputations & death.

What I had absolutely no knowledge of were the mechanisms & differences between T2 & T1 (always assumed that T1 = no insulin from the pancreas & T2 = some)
I had no idea about the level of control that my diet & daily regime would have over my BG levels; blindly putting my trust in the medication that I was prescribed (Oh, how I regret that one with a 2.3 hypo & no idea what was happening)

I think I only knew of 1 Diabetic (daughter of a family friend) throughout my life, though since DX I have come across quite a few ranging from Pre-D to T2 and couple of friends of mine have children who are T1. It helps to find them when I open up about D; I'm not actually on a crusade to educate the world about D but am, in my own way trying to raise awareness in those I come across in the hope that my words may help someone developing T2 or even a fellow D developing complications.

 

[Mini-Vicki]

My dad has had diabetes since he was a kid, so I already had a good knowledge of diabetes, and I specialised in diabetes in animals at work too. So my theoretical knowledge was pretty good, however I was always terrified of developing diabetes. Seeing my dad have fairly severe hypos definitely left mental scars for me, so I had a complete fear of the same happening to me. When I was initially (mis)diagnosed with type 2, I cried for about 3 days, and went into denial for several years. My type 1 rediagnosis and the start of insulin causes another meltdown!
I'm definitely more educated re diabetes now, and have more empathy for both human and animal patients!

 

[Kaylz]

I knew that if they felt off (wobbly, shaky etc) they had to have something containing sugar but even in the 90's when I was at primary school there was a lad in my year that had Type 1 and often went low during PE so they gave him a fun size mars bar or milky way that I now know wasn't the best treatment, I then got to know an older gentleman that doesn't look after himself too great and now has dialysis so when they told me I was rather worried but I now realise that if I look after myself and don't go to extremes that they did I should lead a perfectly 'normal' life 🙂 x

 

[Amigo]

I don't recall anyone at school with diabetes and because back in the day it was called 'Sugar Diabetes', I kind of associated it with people having too much sugar. Type 2 wasn't talked about anything like as much as now and even when my mum was diagnosed, I'm ashamed to say I didn't know much about it back then. In honesty it wasn't depicted as a big deal and I don't recall her ever being given dietary advice apart from reduce the cakes and biscuits!

The first person I came across with type 1 was a young woman, my hairdressers daughter and there was much discussion about how much she hated it and the impact of the constant injections. It seemed like an awful condition to me full of restrictions and cruel injections. However I'm going back decades.

I saw my friend's teenage daughter having a very bad hypo and it brought home to me just how bad and serious these things can be. I also realised how hard it was for parents, particularly single parents and the concern never seems to end. I honestly didn't fully appreciate the pressures and admit to feeling irritated when she got called home many times. I've since told her that and apologised.

It's only since being diagnosed myself (and it hit me hard because I feared it), that I've researched and learned about diabetes generally. I now have a much greater understanding and respect for the destructive power of it and the immediate risk hypos can represent to both types dependent on insulin. Amazingly, I had two type 1 members of staff but in truth they never mentioned their diabetes and I don't ever recall either of them testing, injecting or having problems at work.

My heart sinks when I hear of a child being diagnosed because I can imagine how tough it must be and how scary for parents who must feel on permanent watch initially.

I certainly didn't realise there were other types of diabetes however although I do have a friend who had their pancreas removed.

This site has made me realise that whilst some people do 'suffer' sometimes because of the condition, it doesn't have to limit opportunity but societal understanding of the condition is still very poor.

 

[Steff]

First I knew of diabetes was when my uncle was diagnosed type 1 in the late 90s. Until then it was a none entity to me. I don't recall anyone I know in my school or collage days mentioning it or having it unless they kept it to themself

 

[Flower]

talking about the pancreas I didn't know what or where it was. Wasn't it a saint with a railway station near Kings Cross. 🙄

Matt I'm still laughing ! 😛😛

Thanks everyone 🙂, it's really interesting to read what you knew about D. I started this thread because someone who knows I have diabetes asked me today if 'they' were still treating me with insulin as if it was a course of treatment I was undergoing for a few weeks. I started thinking what if anything I knew about diabetes pre my diagnosis.

 

[stephknits]

I remember having to learn about it in my First Aid at work training. The difference between a hypo and hyper in terms of symptoms was very confusing and I remember hoping I never had to deal with one as I wouldn't have a clue whether they needed insulin or sugar! I was always a rubbish first aider as I hated hearing about anything medical of traumatic so spent the 3 days of the course pretending I was listening and then reading up when I got home.

 

[Lucy Honeychurch]

One of my grandfathers was t1 and as a child I remember my nan giving him insulin injections from what looked like a horribly big syringe and nan boiling the needles and syringes in a pan on the stove. I recall my dad being called to help my nan when grandad had a hypo, apparently he used to try and fight anyone who was trying to get sugar into him and on one legendary occasion he punched an ambulance technician in the face, in his defence he heralded from a long line of dockers and bare knuckle fighters! However I feel really weak when I hypo and couldn't fight my way out of a paper bag lol!

 

[Martin Canty]

'they' were still treating me with insulin

Alas, the level of awareness & understanding is so low; with 1 in 9 of the (US) population being D (and in all likelihood even more than this) we need to educate people on what D is, how it affects our lives (for the better or worse) and what can be done to reverse this pandemic.

 

[Robin]

I was very vague! I certainly never came across anyone at school, we may have covered it in O level biology because I was vaguely aware of its existence. I knew it involved injecting insulin, and I'd heard of the Islets of Langerhans because it always came up in quizzes as the trick geography question.
Then I worked as an office junior between school and Uni, and it was my job to go and buy cakes when it was someone's birthday, and I was told that the Probate Clerk,( who was a retired policeman in his fifties) was diabetic and always had a plain cake, not the cream cakes everyone else got.
Then at Uni, a guy in the year below me was diabetic, I found out because people were talking about the fact that he's had to be carted off to hospital ( I'd some vague idea about diabetic comas, I think) so when he became president of the Uni Law Society and by tradition had to drink a yard of ale, I was surprised that he could do it.
I'm not even sure when I became aware that there was Type 1 and Type 2, I must have read something, because when I was diagnosed, I was aware there was a difference, and therefore aware that I might have been classified as the wrong one!
(Now my cousin has delved into our family history, I know it's what my great grandmother died of, but we've got nobody else in the family)

 

[Mini-Vicki]

Matt I'm still laughing ! 😛😛

Thanks everyone 🙂, it's really interesting to read what you knew about D. I started this thread because someone who knows I have diabetes asked me today if 'they' were still treating me with insulin as if it was a course of treatment I was undergoing for a few weeks. I started thinking what if anything I knew about diabetes pre my diagnosis.

Hmmm I've had his a couple of time 'oh you're on insulin? When do you get to stop those injections?' 🙄
I try not to eye roll, and educate instead.
Although today a colleague of mine said 'it must be nice to have diabetes and take as many tea breaks as you like' (I was having a break because hypo!) I did roll my eyes at him, so much so I thought my eyes would get stuck looking the wrong way!

 

[Lindarose]

Like Amigo I had only heard of sugar diabetes as a child. And didn't know what it was. And there was a girl I remember at junior school who was type 1 and was often in the medical room feeling unwell.
I also have an aunt who began with gestational diabetes about 50 odd years ago and think she's on insulin still.
But I didn't give any of it much thought.
It's only since diagnosis I've learned more about it.

 

[Amberzak]

I knew about the differences between type one and type two. I knew what caused type one (autoimmune). Medicine has always interested me. I remember learning about the invention of insulin in primary school and it inspired me.

I never really thought I'd get it though.

 

[zx10pilot]

What a fascinating thread.
My limited experience was similar to stephknits... No experience at school, no family history, no friends affected (what a sheltered life I must have led!).
I had done three different first aid courses (over about 15 yrs) but all I remembered was that someone was likely to be confused or possibly unconscious when low (if you found someone like this then dial 999 immediately), and your breath smelt of pear drops if you were hi (similarly, dial 999). Luckily I'd never had experience of finding anyone in either condition.

I sort of understood that T1 didn't make insulin and T2 it didn't work properly?!?! but beyond that, I didn't need to know.
There was a certain amount of googling done because of my symptoms (the 4Ts) before I finally went to the Dr, but even so it was a real bombshell to be diagnosed with it!

Prior to diagnosis I didn 't know anyone with D.

Wow, how things change.
I now know _alot more_ about it but the original advice still stands - if someone collapses from either being too hi or too low the best thing is to call 999 first. Then try and help them.

Oh, and now I know... two T2s! (but no T1s apart from you lot on here 🙂 )

 

[mikeyB]

My mum became Type 1 when I was about 4, so I've known diabetes all my sentient life, and how to treat a hypo from around age 6. I knew nothing about Type2. Indeed, I didn't know mum was Type1, just had diabetes,and had to boil up needles and syringes, the needles being about the gauge that is now used to take blood. And funny tablets that bubbled up in wee to see if there was any sugar in it. Big brother and me found they bubbled up in Tizer, too.

Just under 40 years later, I used her blood testing strips to diagnose myself. "You'd better see a doctor" was her sardonic remark.

🙂

 

[Greyhound Gal]

I knew nothing until I was in sixth form and a friend had T1. She told me about the need to inject insulin and the possibility of blindness and amputations if she didn't. I wasn't aware of any other types of diabetes, and to my shame, never really paid any attention until I was dx, after which I read up and joined this forum.