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??

Slightly different take but my ex was diagnosed with type 1 at 57 years old (after incorrectly being diagnosed with a type 2). It is definitely a big deal. Having said that I don’t think he manages it particularly well. Have recently gone out with him and we’ve had to do emergency stops for sandwiches and orange juice due to his glucose levels being in the concerning range or he thinks he’s about to pass out. He’s constantly checking his levels and injecting. This is a grown man. I can’t begin to imagine how a child deals with it.

You are not being unreasonable. My just turned two year old was diagnosed a year ago and it was incredibly hard. They don’t eat reliably, blood glucose is inconsistent and you worry so much overnight and the hypos can be sudden I think due to the bursts of energy little ones have at that age.
I just wanted to say it does become manageable and you find your groove with it all. Our little one is now on an omnipod & an Dexcom and it’s been so helpful for allowing her to eat when and what she likes more often. She’s also gaining a very small understanding of it (likes to claim she having hypo for a snack!)
It’s never not a worry or a consideration and there is a lot of people who don’t get it but you definitely find your way with it all. I tend to zone of daft comments now.

I realise this must be really difficult for you and I hope your child is living a good life. But people don’t engage in all things in life. I am sure you don’t understand the detail of lots of things that are important to people you know.

That made me smille
How clever of her 😂

I think the issue isn't necessarily the lack of understanding, it's people acting as though it's no big deal when they don't have a clue either way.

Yes defintley
As that thread the other week showed
If you have no experience with Diabetes or any other medical condition
You have no buisness coming onto a thread offering " advice"

Exactly. I know nothing about Crohn's disease so I would never go on a thread and offer advice or tell someone their symptoms are no big deal - and it should be the same with diabetes. If you have no idea about it then just keep your mouth shut, lol.

Not sure where you are getting I have berated anyone!

I think it is fine to not understand the details of lots of things but it is kind of important to understand in a situation like this that you don’t know as much as the mother of a newly diagnosed T1 (or any chronic condition) and keep your mouth firmly shut other than comments along the lines of that you are really sorry they are going through this and it must be tough to deal with. Anything else makes you a complete, utter dick.

OP I am really sorry you are going through this. It might be worth seeing if there is a local support group so you can find some other local parents. I don’t have any experience of a child with T1 but my DH has had it since he was 9 and a really good friend is an amazing diabetes nurse. Her son developed it whilst away from home and a nurse where he was nearly gave him insulin during a hypo, rarely been speechless but that was one of the occasions I was.

Just to give you a more positive story DH has had it for 47 years now and during the early days there was 3 to 4 times a day testing urine sugars by something like 2 drops of urine, 10 drops of water and a reagent tablet, dip sticks came later . He has needed a bit of laser on the back of his eyes some years ago but that has held everything at bay.

He’s had a pump for just under a year and it has been amazing, makes a big difference to both our lives. Just a moment ago(not knowing what I was reading!) he showed me his pump saying he was 100% in range for yesterday. That was after day out where we ate out twice and did a look of walking.

You get annoyed and enraged by people who do not understand……

I actually wish these illnesses had different names completely, it might go some way to stop people conflating the two

I get annoyed at people who downplay the huge amount of managing care needs it takes for my child over the whole 24 hour peruse. It’s got nothing to do with them not understanding.

It’s quite obvious from my post I haven’t said anything to anyone hence why I’m venting here.

What an odd thing to be a dick about to someone who has just spent 2 weeks in hospital with a very ill child.

Huge big deal! I’ve supported a little one for the last 12 months at nursery with it! Had great fun when we had a student in who thought she was an expert in his care because her grandad had it and her mum was a first aider! 🤦🏻‍♀️

That's not the same as berating them

I am a teacher and have a recently diagnosed 9 year old in my class. It is a massive deal! All staff in the school has had training on the pupils needs, but lots of them really dont get it fully.

For me it’s the same as “everything happens for a reason” or “look at x as a silver lining”.

If you don’t know what someone is going through or haven’t walked in their shoes stop saying crap like above. The only response should be “that sounds hard, how can I support you”

It's a huge deal. One person with T1 in my immediate family, one in my extended family, and one person who works in diabetes research as a scientist. First one has a closed loop pump but still has so many issues, despite being so careful with food and exercise.

Every sympathy to you and your family dealing with this. All I can say is plug in as much as possible to things like diabetes UK, and hang in there. Over the decades of my experience there has been so much progress in the science and technology that hopefully things can be a little better as your DC grows up.

I've got a history of type 2 diabetes in my family on one side and have a condition that greatly increases the chances of me getting it on top of that. One member of them passed away many years ago due to basically, burying their head in the sand and not seeing a doctor until it was too late and by then the vascular damage from their untreated type 2 diabetes was done and they died due to complications from that.

I also work in healthcare and have seen both very poorly controlled type 1 and 2 (which can happen despite people's best efforts and trying to do everything right) and the effects that has on them, but also people with either who have always managed to have incredible control of their diabetes and therefore have no ill effects from living with it.... but that's also often takes tremendous effort to do so.

It's something I'm quite passionate about due to my history and job, so I do like to try and correct misunderstandings and false information or ideas that people might have about the various types. I know there are others like 3c/1.5 but 1 and 2 are the types most people would know about.

Do you understand the severity of every and all medical conditions yourself op?

It must be very enraging, just like people assuming T2 is related to diet

I agree with that

It’s a huge deal! My 10 year old was diagnosed type 1 2 years ago and it takes over a huge part of the family’s life. I definitely didn’t realise before how big of a deal it was though so other people won’t get it unless you are very close to someone with it. It’s a very hard thing to manage with so many variables and no one day looks the same and no one with diabetes has the same reactions to things as other diabetics! We manage my son’s pretty well with his pump, he is usually over 90% time in range but it takes a huge amount of effort from him, me and his dad to get it like this.

But you see that attitude a lot on Mumsnet. People who don't take other people's health worries seriously and appoint themselves gatekeepers to NHS services. It is quite scary and you hope none of these self righteous fools ever get near an actual healthcare role.

My grandson was misdiagnosed by a locum GP and ended up in intensive care with DKA later that day. If his Mum had posted on Mumsnet no doubt plenty of people would have told her not to 'bother' A & E. Instead she rang 111 and they sent her straight there.

This isn't the same thing. If op were to belittle the impact of other medical conditions then you might have a point.
It's not the understanding that's the issue, but the suggestion that it might not be very serious.