Diabetes diagnosis - family's reaction

[pebblesparker]

My 16yr old DD was diagnosed with Type 1 diabetes on 29th March. We were called to see the GP after many visits and blood tests. and were advised that because of a very high BG level and DKA (diabetic ketoacidosis) we needed to immediately go to A&E. Very traumatic and distressing for her but after 3 nights in hospital her levels were stabilised enough to be discharged. She has so far adjusted amazingly but it is still very new and she has down moments. Throughout this I kept my mum and 4 sisters and 4 brothers updated. Until two days ago when she received 1 card, not one of them had contacted her directly to offer support and understanding. This was only as a result of me expressing how sad the lack of contact made us both. Whilst a couple have texted me to ask how she was, I have suggested that they ask her. They are all able to contact her via social media or even call her mobile! It would mean a lot to her to feel that her relatives were thinking of her. I know that you can't make people behave the way you want them to but she was very poorly and I feel that they have not taken this seriously. AIBU to still be furious and not want to be in contact with them for a while?

Im so sorry to hear this and my heart goes out to your DD.
I also have type 1.
I find that all too often people that don't have it or understand it don't know the seriousness of it and underestimate what a big deal it is.

People commonly mistake T1 and T2 as well.

If I were you I'd have a very in-depth chat about it with your family and explain how seriously ill she was as they may not understand.

I'm here if you need a hand hold, or if she does.
Feel free to PM me for you both xx

So sorry to hear of your daughters diagnosis and the lack of support you're feeling.

Sadly, there are many misconceptions about Type 1 diabetes with many people genuinely believing it's almost self inflicted by eating too much sugar! Also, many people are ignorant to how serious it is and what a life changing condition it is to stabilise and manage.

Get some information leaflets and ask those whose support your daughter would value the most, to read them.

Yanbu OP. I had the same thing when my DD was diagnosed.

However, I don't think anyone who has never had to deal with diabetes understands the amount of work that goes into dealing with it, or just how serious this condition can be.

Not helpful, but I got really angry with my mother over how she dealt with it (or didn't. Never offered any help or wanted to hear about it) and over 9 years later, we still aren't right.

A friends son has type 1 and if I’d know how serious it was when he was diagnosed aged 2, I would have immediately sent cards and gifts and help in any way possible. I went to stay the night a few months later and witnessed the rigmarole they go through with carbs, insulin, finger pricks etc 24/7. A mutual friend commented that the friend was ‘making a fuss’ on Facebook about her DS diagnosis and they got short shrift from me - but if i hadn’t have visited I would have had no idea how life changing it is.

Get them to live 24hrs in your shoes.

I sympathise. I had similar when diagnosed with type 1. The only one of my relatives who sent me a card and a present sent "Chocolat" Yes the book all about eating chocolate where the diabetic character dies! I agree you perhaps need to explain the diagnosis, how ill she was and how it will affect her life.
And tell her from me, she will be fine and diabetes will not stop her from doing what she wants to do.

for your DD - whilst she WILL get on top of it, it's a hard learning curve at first. I agree, I think there's a lot of ignorance about it. Your family will most likely feel awful when they realise what it really means.

I'm so sorry to hear of your DD's diagnosis and totally recognise what you are saying. My son is 11 and has had type one diabetes for nearly 3 years. There are good groups on facebook including one for teens with type one when she is ready to connect with others.

So sorry to hear about your daughters diagnosis. We had exactly the same when my daughter was diagnosed three years ago still no understanding or concideration from family members. They make comments like well “ SIL is poorly too she has a terrible cold and don’t be so dramatic she looks fine” while daughter is sweating and shaking after a hypo 🙄. There is lots of support out there within the T1 community. We are all there to help one another.
You really find out your true friends when you have a child diagnosed with this disease. It’s sad but as they cannot see the disability they won’t believe it is there.
If you ever want an ear private message me there is nothing like talking to another parent going through the teenage years with their type one warrior. Big hugs OP 💐

When I was diagnosed with type 1 diabetes at 10 years old (I am now 24) I called my best friend from intensive care to say what had happened - his mum hurried him off the phone because they were going out not seeming to understand the gravity of what was going on. My mum was livid and it took a while for them to not only realise their mistake, but also to apologise and for us to move forward. I hope your family make more of an effort sooner rather than later - a diagnosis is serious and should be taken that way by friends and family but unfortunately I just don't think people realise sometimes the gravity of it all. Am here if you would like to vent or for some advice about teen years and diabetes. Hope things pick up soon x

Hi pebblesparker, my husband has had type 1 diabetes all his life, diagnosed at 18 months and 57 now! He has always had a positive outlook and it has hardly ever stopped him from doing what he wanted.
He has said he was a bit lackadaisical about it as a teenager but is still in good health now so must of kept on top of it somehow. We have 2 children and 3 granddaughter's they take it in their stride and non are afraid of jabs at the doctor's, they see my hubby having his insulin jabs all the time.
I agree that a lot of people don't understand the full implications of a diagnosis, or the rigmarole of keeping sugar levels stable. There's alot of ignorance around and even friends/people we know have assumed my husband has somehow caused his diabetes through poor diet etc. We've slowly educated all our close friends but it's been difficult at times and we still get some daft and insensitive remarks.
If hubbys sugar is down he can appear drunk, but we have all become very good at noticing if he needs a sugar hit, even our 3 year old granddaughter keeps an eye on him.
If your daughter surrounds herself with good friends and family who understand her condition, they'll look out for her and she'll be able to lead a happy normal life. When my husband was younger he didn't like people to know, but he now realises it's better to be up front about it, real friends will be supportive once they understand. It also takes the pressure off me and I don't worry about him so much. Please reassure your daughter that she will be fine and start educating your relatives and friends so they don't make any insensitive comments.

People just don’t realise the seriousness of t1d or the demands of living with it.

I have t1. It is a bit of a bugger at times, but it quickly becomes part of your life. I hope your daughter comes to terms with her diagnosis.

And pump therapy has changed my life. Worth considering once the dust settles.

Yanbu, there is a lot of ignorance about Diabetes in general, but especially having type 1. It's a massive life changer and a steep learning curve, but your DD will get there.

We have a friend who’s DD was diagnosed with t1 and before that I didn’t really appreciate what it meant in practice. As for cards, I wouldn’t send a Get Well Soon card to someone who has just been diagnosed with a lifelong condition IYSWIM.
Having said all that, it must have been very stressful for you and your DD and your family should have been more supportive.

I totally relate. My daughter is type one and the condition is all consuming - constantly trying to maintain good glucose levels, weighing/carb counting every meal eaten, finger pricks, insulin, pumps, cgm's - the list is endless.
It can be exhausting and I worry so much all of the time - our carefree life from before has certainly gone, although of course I do my best to ensure she has a "normal" as possible childhood.
But because this condition is so misunderstood and is invisible, to lots of people it is nothing, or simply just having a couple of injections a day!

I try not to get angry and remember that other medical conditions are probably similar - unfortunately you only really know what it's like when you are living it.

Sending love to your daughter x

I don;t think it should make a difference to peoples' reactions whether it is T1 Or T2 diabetes. It is a myth that only T1 should be taken seriously. Diabetes is serious in any form and anyone with a diabetes diagnosis needs support to manage their condition.

I feel sad reading this that OP and her DD have not been given that support from those who should be there for them at this time. for you OP and your DD.

@moontree I don’t think that’s a very helpful comment

DP was diagnosed with T1 last year. He's always thought he was going to end up with diabetes as his dad has it.

I know it's not always hereditary.

But he didn't want to be told for definite so kept putting it off but when he did bite the bullet his bloods were at 15.3.

Now he does moan about not being able to eat when he wants without having to rest etc he's getting used to it.

Sorry to hear of your daughter's diagnosis.

I would cut some slack for the ones who contacted you inquiring about how she was. They did inquire and show that they were thinking of her, just not in exactly the way you would have preferred. Maybe they still think of her as a little kid, or maybe they thought she'd be uncomfortable having the relatives all checking in on her.

They guessed and got it wrong. I think save your annoyance for the ones who didn't bother.

I was diagnosed as T1 when I was in my early twenties. I'm so sorry to hear about your daughter's diagnosis and also that the family are being crap. Unfortunately as others have said above it is one of those things no one truly understands until someone close to them goes through it. Even my parents don't understand (because I was an adult when it was diagnosed) but my DH is basically an expert.

Try not to dwell because you have other things to focus on now but nor do you need to forgive them.