AIBU diabetes not a big deal

[Fluffyscrubberdo]

Does anyone else have a child with type 1 diabetes and get annoyed at the people who don’t have it but maybe know an adult with it and therefore insist on always claiming it’s really no big deal to manage only based on their very vague connection to it??

It also enrages me that so many people don’t understand the difference between type 1 and 2 and still try to claim a toddler has it due to diet.

Do you have a dependent child with type 1 and think it’s no big deal and makes no difference to your life??

It’s a massive deal because it’s an important part of YOUR life. Why would someone else care to inform themselves about a condition that has no bearing on their life? . Do you know about every condition under the sun and all the right things to say and do?

I say this as someone who grew up with a T1 parent and sibling so very, very well aware of all that goes with it. I’m not entitled to think that people should know about it.

It is very hard to live. You constantly have to prepared for high or low blood sugar and spontaneity is almost impossible.
Just to add a little hope, my MIL was diagnosed at 4 and is over 80. She has minor neuropathy but no other diabetes related illnesses. Sadly she can’t manage her own diabetes any longer due to dementia.
DH was diagnosed at 9 months and is now 50. He has lumps from injection sites and minor eye changes but that’s all.

They've both seen a lot of changes and development in diabetes care and it does seem that research is coming where they can make a miniature artificial pancreas. Hang on in there and keep hoping for the next big step forward

I have type 1 diabetes but it developed during my first pregnancy at 41. So yes a shock but I manage it well and just get on with it.
But for a young child it’s a completely different situation. Their bodies are changing every day, they don’t understand the complexity of the condition and how to manage it. On my food and insulin management course there was a lad who had been diagnosed at 18 months! Fortunately his mother was very on the ball and recognised the symptoms.
My DD was diagnosed with MS at 17. She doesn’t tell anyone. Partially because of the reaction, which can be quite dismissive as it often is with hidden disabilities. Her just knowing she has lesions on her brain and spine and that it is progressive and incurable is a psychological burden that can not be minimised. You knowing your child has a chronic condition that needs constant management is a burden you carry as well as your child.
It is unfortunate that Diabetes 1 and 2 share the same name and as the latter is much more common and as the number is often dropped people understandably confuse them.
I suppose you could consider yourself an ambassador. Not a preacher, but if someone dismisses it as ‘no big deal’ have a couple sentences at the ready like ‘if it looks easy that’s because there’s someone working very hard behind the scenes to make it look easy’.
I think it’s great that people like Alexander Zverev was shown testing his blood sugars at Wimbledon. It demonstrated that you can succeed at a physically demanding sport yet it needs to be continually monitored.
There’s always going to be people who just don’t get it, or think they do when they don’t!

Well that’s the point, people assuming diabetes is caused by diet and then questing what my child has been eating at one year old. Or did you only half read my post and just want to jump on me because you have assumed I was judging anyone?

YANBU. So many people don’t know the difference between type 1 and 2 when actually they are very different and it’s unfortunate they have the same name.

Having a young child with it would be a nightmare.

It can be a big deal with adults with type 1 too. Constantly needing to be aware of blood sugar levels, risk of hypos, and for men it can cause sexual problems as well. Unless you have it or are close to someone who does it’s hard to know how disruptive it can be to life.

Sheku Kanneh-Mason has type one - I am so impressed with how he manages an international career with this as I know how hard it all can be. It is great that he is able to do this, but his high profile might lull others into thinking that it is a doddle when it isn't.

Yes but @Fluffyscrubberdo have you tried cinnamon?

God help the person who suggests this for my child. There will be violence. 😂

The point is thst if you have no understanding of how Type1 can impact a person you should refrain from minimising it .

If I didn’t understand a medical condition I wouldn’t tell the person it’s no big deal because my old neighbour’s had it and seemed fine…

A taxi driver told me my son should cut out sugar when i told him i was picking up my sons insulin
He had acute necrotizing pancreaititus at 16 which destroyed his pancreas but yeah cutting out suger will help 🙄

I don't have a child with diabetes but I grew up with a friend and family member with it. It's a massive deal. It's so ignorant of people to compare it to type 2. Type 1 diabetes is life threatening and restrictive and no fault at all of the child or their parents. I have thought before that type 2 should be given another name.

It is a big deal, especially as it seems to encompass a range of insulin needs. My sister is Type 1 and now has a pump and follows a keto diet. She says for the first time in 50 years she feels normal. Tho' I find that keto diet a nightmare when she comes to stay (so expensive to follow too).

...and that's precisely the point.

If you don't understand, just keep your mouth shut. It's not hard.

Has it gone over your head that my post was about people very close to us and not strangers?
‘Why would someone else care to inform themselves about a condition that has no bearing on their life?’
Wanting someone to not minimise a very serious chronic medical condition about a child they are very close to seems like a fairly reasonable expectation.

I'm not sure whether renaming one or other of the diabetes would resolve this. I have many relatives with type 2, which can be controlled and put into remission with strict diet and lifestyle changes, which is completely different from type 1, but I think does give the impression that diabetes as an illness is ' not a big deal'

My son is 32 and has been T1 for 11 years. My SiL has just been diagnosed T2 and is forever moaning about how difficult her life is.

There really isn't any comparison IMO.

There are other types of Diabetes other than just type1 and type2 so i dont think renaming would help.

But as they don’t actually know anything about it, as I agree with you they won’t if they haven’t experienced it nor would I expect them to, then going ‘oh it’s no big deal’, ‘it’s fine, they sort it out themselves and you don’t have do anything’ or ‘are you sure they can eat that?’ is really bloody annoying! Don’t make comments on stuff you know nothing about!

I am well aware it's a big deal, sorry you've been on the receiving end of ignorance.

My dd had a chronic illness as a young child and it certainly brought out the dim people to provide me with helpful advice from 'homecooked food will cure it' to 'you wanna ask for antibiotics' ... for an autoimmune disease.

But that isn't true for everyone with type 2. I used to work with a man who developed type two. He wasn't overweight,very sporty so no for him it couldn't be reversed with diet. Within months he was on insulin injections and despite him observing all the rules he'd been given his was very hard to manage.

My DH gets outraged at people who confuse type 1 and 2. He is the adult with type1 and still my family try to advise him on his diet.

The worst being that three members reversed their type two with diet and eating bitter gourd so keep telling him how they did it.

I was just about to say the same. DH is Type 2 and and it's really not as simple as "strict diet and lifestyle changes" - sometimes you can do everything right but you still need lifelong medication and monitoring etc.

i think sometimes people think they're being helpful down playing it, and they also have the luxury of gaslighting themselves somewhat so they don't have to worry so much. obv you can't because you're her parents and working so hard constantly to keep her well.

if it's people you need support from I'd be direct - I'm sure you're trying to help telling me it's all fine, but it isn't and I'm struggling. I actually really need you to hear me

The only way someone could think it was no big deal would be having zero experience or simply being nasty.

my daughter shared a room with a girl with diabetes on a school trip. The whole group were exhausted by the numerous checks through the night, wakenings etc. And that’s not to mention the embarrassment of having teachers coming in multiple times a night. The girls were amazing but came away with real insight and empathy having experienced the same disruption for only a few days and realising this is this child’s everyday life.

OP, brush it off. You know the truth. Who gives a shit what people like this think? Stick to real friends and empathetic people.

op is talking about her close loved ones. the people who should understand why op is exhausted. the people who should understand why a "just pop over and I'll throw some food together" isn't helpful. the people who should have some understanding of medical appointments etc.

not a stranger on the street.

at the very least, "gosh that's really hard for you right now" is better than nowt.

I have two friends with kids with genetic issues. the first thing i did was Google NHS details on it. When one talks about the issues with itchiness I don't say "oh yeah Jack had a rash once, get some E45" I empathise and support her feelings. when one talks about major spinal surgery I don't say "ah, it'll be fine, surgeons do it every day"

we have axkid at Scouts with T1 diabetes. it isn't just the eating, it's the feeling left out. we do smores and she takes hers home or Dad let's us know she can have 1 marshmallow and biscuit but no chocolate. honestly I don't understand it but I understand it's hard for them all, its work on top of ordinary child rearing, it's scary having a kid with a long term condition aa