# Don't tell



## Hayley130 (May 19, 2020)

I was wondering if anyone has any advice, my daughter got diagnosed with type 1 about 2 months ago and will not tell anyone. The diabetes team has tried to get her to tell a friend but she refused to. Any help with ideas to help her come to terms with type 1 would be appreciated thanks Hayley


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## Thebearcametoo (May 19, 2020)

Hi, I’m sorry for her diagnosis. How old is your daughter?


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## Hayley130 (May 19, 2020)

Shes 14,she's finding things hard at the moment.


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## mikeyB (May 19, 2020)

I can’t offer any advice other than to say that there is a ton of experienced parents on the Parents forum on this site. I’ve asked the powers to move this thread over there, where advice will flow in.


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## Hayley130 (May 19, 2020)

Thanks for everything mike


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## Barbie1 (May 19, 2020)

Hi Hayley
I was diagnosed at age 12. 
I never would tell people, right from the start
Even now 52 years later few people outside my family know, it is not something I am good at talking about. 
So I have every sympathy with your daughter, certainly, although I do appreciate that it would be a good thing if her closest friend knew,  just in case they might want to go out together sometime without mum there!  Can you sell it to her that way, perhaps?


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## Hayley130 (May 19, 2020)

I have said they need to know incase she needs them to help her. But she  just puts up a wall. She doesn't seem intrested in telling anyone never mind carb counting and everything else that gos with it.


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## Thebearcametoo (May 19, 2020)

I think it’s common at that age not to want to be different. It’s still very early days and I would just give her time. If she has a particular friend then maybe encourage her to tell just that one person but right now it isn’t a priority. Is she letting you do the carb counting or not wanting to carb count at all? Keep in touch with her diabetes team with how she’s doing. 2 months is still really early in her diabetes journey and she will have plenty of time to talk to other people about it.


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## Hayley130 (May 19, 2020)

I do all the carb counting very slowly  takes me a while. I think thats what she needs time and to try and get her head around having diabetes herself. Her diabetes team is fantastic and calling weekly.


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## Bronco Billy (May 19, 2020)

Hi Hayley

I’m sorry to hear about the diagnosis. Your daughter has had a lot to cope with and she is still very young. I’ve always believed it’s harder to be diagnosed in the teens than when my two were at ages five and six. At their age, they hadn’t really had the opportunity to get used to doing what they wanted when they wanted. Your daughter will have more life experience, which will make the adjustment harder.

My daughter was very reluctant to talk about it for a long time. She still is to some extent, but that’s more to do with her personality, she’s not someone who talks much anyway. Was your daughter’s diagnosis a traumatic one? My daughter was in severe DKA and we nearly lost her. She remembers that and how bad she felt, which contributed to a feeling of resentment and an unwillingness to talk about diabetes. Could it be the same for your daughter?

Counselling may help, it will give her the opportunity to talk to someone about how she feels and establish coping mechanisms to help her come to terms with her diagnosis. I know this sounds unlikely, but my daughter told her counsellor things she didn’t tell me and my wife.

As has already been suggested, it might be worth trying to convince her of the importance of telling friends about it so they know what to do if there is a problem. She doesn’t have to tell many, a couple of her closet friends is enough, but she would find it reassuring to know there are people with her on school trips (remember those?) etc who recognise when she is hypo and can either get help or help her themselves.

Ask your hospital team if there is a support group in the area. Children will often talk to other children with diabetes in a way they won’t talk to their friends and tell them things they won’t tell anyone else.

It may be something that sorts itself out over time as she comes to terms with the diagnosis, but it would be great if that process could be accelerated somehow.

Take care


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## Hayley130 (May 19, 2020)

Hay,
Thanks for your reply, she won't go to any groups we have talked about that already . And the diabetes team is going to get a psychologist to give her a call in a couple of days. So hopefully that will help. But with lock down and everything all we have is phone calls at the moment. I would love to go to a group but i dont think she will and I don't think i can leave her behind lol .


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## Pumper_Sue (May 19, 2020)

Hayley130 said:


> I have said they need to know incase she needs them to help her. But she  just puts up a wall. She doesn't seem intrested in telling anyone never mind carb counting and everything else that gos with it.


I wonder if your daughter is embarrassed about her diabetes?
I ask because before lockdown whilst walking with a couple of young ladies aged about 19 the younger of the two suddenly said she felt tired and a bit odd. He mate whispered to me that she was diabetic and hated telling people.

So I just asked her outright if she was hypo and did she need some JB's as I certainly did. I just held them out to her so there was no embarrassment on her part. Once we were both feeling more normal I had a chat with her and it transpired she was embarrassed by her condition so hid it from everyone 
Her hiding her diabetes went as far as not carrying any hypo treatment which she very nearly paid dearly for on that walk.

I'm glad the lass feels able to come and see me for a chat and or phone when she wants a chat and now has a better outlook on life.

Perhaps have a chat with your daughters school head and see if their are any other youngsters with diabetes who could buddy her a bit.


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## Hayley130 (May 19, 2020)

Hay Sue, 
Good idea never thought of asking the school if there is anyone else she could talk to. I hate the idea of my daughter being in the same situation as that young girl she was so lucky you was there and it sounds like you have a good friendship . Il give the school a ring and see if they could sort something out. I think it will be in September now but i think it would do her good as we dont know anyone else with type 1. Thanks for your help its really appreciated.  Thank you Hayley


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## SB2015 (May 19, 2020)

Hi @Hayley
Sorry to hear about your daughter’s diagnosis.

It is very early days for her, and with the current lockdown, she has time with you to gradually come. To terms with things.  It will be useful for her closest friend to understand what is going on, especially with regard to hypos, but there is time.  So long as she has hypo treatments available at home, recognises these and deals with them. She will come to little harm.

Are you currently doing the carb counting for her, or is she uses fixed doses of Bolus insulin at present?  She may be more keen to focus on this when she wants to be out and about a lot more.

I found the book Type1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas very useful.  It does explain things clearly and may give your daughter a chance to find out about and understand her condition, but in her own time.

I hope that things start to settle.


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## stephknits (May 19, 2020)

Hi, my daughter is 16 and was diagnosed two weeks ago.  I also type 1, so she does know someone with it.  She also hasn't told any of her friends about her diagnosis and when I ask her about it, says she doesn't need to right now.  I suppose with the current situation she is right and I am presuming things will be different once she goes to college in September or whenever.  I am trying not to worry about it too much for the moment.  I think in our case she really just doesn't think anyone needs to know right now.  It can be such an isolating condition, so I understand that you want her to have people to talk to and you do too. I think contacting the school is s great start.


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## Hayley130 (May 20, 2020)

SB2015 said:


> Hi @Hayley
> Sorry to hear about your daughter’s diagnosis.
> 
> It is very early days for her, and with the current lockdown, she has time with you to gradually come. To terms with things.  It will be useful for her closest friend to understand what is going on, especially with regard to hypos, but there is time.  So long as she has hypo treatments available at home, recognises these and deals with them. She will come to little harm.
> ...


Im carb counting just started. Not very good and i get so frustrated what dose not help the situation. She dose have hypos but she doesn't always recognise them. Whats scary.


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## Flower (May 20, 2020)

Hi @Hayley130 ,

As an ice breaker and a safety thing could you encourage her to choose a bracelet with Type 1 on it, there's some lovely designs on Etsy/ebay/amazon etc in beads/silver that don't look at all medical and might just help her talk to her friends about why she's wearing it or something like a silicone wristband eg FunkyPumpers





						Wristbands – Diabetes Equipment – Insulin Pump Pouches / Holders – Official Diabetes Equipment Suppliers
					






					www.funkypumpers.com
				




It is really tough when you are first diagnosed. I was diagnosed age 12, my parents told me I couldn't tell anyone. That immediately set me on a path to cover it up and feel ashamed of having it which still remains with me nearly 42 years later. Encourage her to feel proud of all she is doing to keep herself well. Best Wishes.


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## trophywench (May 20, 2020)

Oh Flower!! (why on earth? etc)  Mind you despite my being a married adult at that time, I'd never met as far as I was aware, a single other person who was T1, though a couple of elderly neighbours/friends of parents were known to be T2.  My mom knew a T1, round about her age, hence she knew it didn't kill you etc etc.  In fact a couple of weeks before, she'd told me I had all the symptoms of T1, to which I'd  replied Gawd - don't be so pessimistic mother! - to her credit, she never once said 'I told you so!'  LOL 

I really really missed my best mate when I was diagnosed - she'd literally just gone off on honeymoon, touring around Italy for 3 weeks, the Thursday evening before I'd been standing on the windowledge of their new house, helping her hang her lounge curtains.  She couldn't have done anything of course, but 2 heads etc when you know you both generally think the same way …...

A problem shared ….. does actually help even though it doesn't halve it cos it's better for mental health.  Hence - you, mum, really have to let your DSN (she's your DSN as well as your daughter's!) know everything whether daughter wants you to, or not.  Plus you WILL have to tell her school, ask her to consider that aspect.


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## Drummer (May 20, 2020)

Perhaps you might suggest that she has an 'emergency purse' - as she is now a young teen she is going to be testing her wings, so suggest that she takes with her some sensible items separate from her handbag - a phone card, some coins, phone number of contacts she might need, a tiny torch, a comb, a card to say she is diabetic, a spare key for the door, a little box of sugary things. Stress that it is part of being a grown up person to have that sort of thing, just in case, means she is showing that she is going to be able to cope on her own in minor emergencies.
I have only needed such things maybe three times in my life, but it has probably made a considerable difference to the rest of it Just to have money to get on a bus, a torch to be able to read my location in a phone box - and a comb to jab in someone's face, on one occasion which still makes my pulse race, got me out of some tight corners. 
It might sidestep the present problem, and it alters the mindset too, focusing on being more grownup than reliant. You can always address the telling someone later in the year - its a long time when a teenager.


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## SB2015 (May 20, 2020)

Hayley130 said:


> Im carb counting just started. Not very good and i get so frustrated what dose not help the situation. She dose have hypos but she doesn't always recognise them. Whats scary.


No one is good at carb counting at the start.  It is a new skill and one that you will become an expert in.  I still remember how it felt like so much that I needed to know.  Now I am amazed at how many foods I know the carbs for.  

Anyone with T1 will have hypos, and it is important that she learns the signs that she experiences with these.  We are all different and the symptoms do change over time.  Just make sure there is something sugary available.

Your DSN will be used to the issues that you are experiencing at present.  Contact them as they are there for both you and your daughter.  That is their job and they will want to know how you are both getting on.
Keep in touch and we will continue to try and help


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## Bronco Billy (May 20, 2020)

@Hayley130 would your daughter consider joining a Facebook page where she can be a bit more anonymous? I found this one, although I can't vouch for the quality of it as you have to request to join. 









						Type One Teens | Facebook
					

This is a place for teens with Type One Diabetes. Where you can let out your anger, talk to people who know what you're going through, get advice and generally meet new people :) So come and show...




					www.facebook.com


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## Hayley130 (May 20, 2020)

trophywench said:


> Oh Flower!! (why on earth? etc)  Mind you despite my being a married adult at that time, I'd never met as far as I was aware, a single other person who was T1, though a couple of elderly neighbours/friends of parents were known to be T2.  My mom knew a T1, round about her age, hence she knew it didn't kill you etc etc.  In fact a couple of weeks before, she'd told me I had all the symptoms of T1, to which I'd  replied Gawd - don't be so pessimistic mother! - to her credit, she never once said 'I told you so!'  LOL
> 
> I really really missed my best mate when I was diagnosed - she'd literally just gone off on honeymoon, touring around Italy for 3 weeks, the Thursday evening before I'd been standing on the windowledge of their new house, helping her hang her lounge curtains.  She couldn't have done anything of course, but 2 heads etc when you know you both generally think the same way …...
> 
> A problem shared ….. does actually help even though it doesn't halve it cos it's better for mental health.  Hence - you, mum, really have to let your DSN (she's your DSN as well as your daughter's!) know everything whether daughter wants you to, or not.  Plus you WILL have to tell her school, ask her to consider that aspect.


Thanks you made me smile. I am telling the DSN everything even though i get my daughters eyes burning holes in the back of my head  lol


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## Hayley130 (May 20, 2020)

Bronco Billy said:


> @Hayley130 would your daughter consider joining a Facebook page where she can be a bit more anonymous? I found this one, although I can't vouch for the quality of it as you have to request to join.
> 
> 
> 
> ...





Bronco Billy said:


> @Hayley130 would your daughter consider joining a Facebook page where she can be a bit more anonymous? I found this one, although I can't vouch for the quality of it as you have to request to join.
> 
> 
> 
> ...


Shes not on FB shes just not intrested more you tube. The poem is lovely and stands for alot at the moment i hope u don't mind but iv screen shot it.


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## Hayley130 (May 20, 2020)

I w





Flower said:


> Hi @Hayley130 ,
> 
> As an ice breaker and a safety thing could you encourage her to choose a bracelet with Type 1 on it, there's some lovely designs on Etsy/ebay/amazon etc in beads/silver that don't look at all medical and might just help her talk to her friends about why she's wearing it or something like a silicone wristband eg FunkyPumpers
> 
> ...


Thanks even though its hard for me it must be nothing compared to what she is going through. I tell her everytime she takes a step closer of coming terms with T1 im proud of her and we are a team we are in this together.


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## Bronco Billy (May 20, 2020)

@Hayley130  I don't mind at all. The words are actually part of the lyrics to a song that was written to raise money for JDRF. If you'd like to hear it, you can find it on YouTube,


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