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Newly diagnosed type 1 age 19

L

Lauram16

Newbie
Messages
1
Type of diabetes
Family member
Treatment type
Insulin
Advice please ...
my niece is 19 in her second year of uni and was diagnosed completely out the blue with type 1 diabetes 3 days before Christmas. It’s a huge shock to her and the whole family. How can I support her ... she’s really struggling with the implications and just wants to get back to uni and “normality “ . She lives away from home and we all so worried as it really is such early days. She’s refusing to tell friends or join any groups or forums x
 

The period after diagnosis is difficult at any age - I was 54 when it happened and one unexpectedly has to come to terms with a lifetime of injections and monitoring sugar levels.

Young people are also very self conscious and in the most part don't like to be too different from their peer groups so I can understand why she isn't telling anyone or talking about it yet, that will probably change.

Give her some space and let her know that you're there if she needs you. You can also drop the odd hint that we're a friendly bunch with a lot of shared experience and we're very willing to help. It is actually possible to read these forums without joining, she just will not be able to post - and there's a lot of information on the main website if you can coax her in that direction.
 
It would help to talk to fellow type 1's, whether in person or on a forum. But I remember I didn't want to tell anyone at first for a little while until I was ready to answer questions and knew the answers.

Just try to tell her that she can anonymously ask questions about all sorts of issues and get help and no one will know who's asking or think it's silly. A whole group of a variety of people that care about helping fellow T1's!
 

I have to agree with Marie talking is a great way to ease what is a stressful time, I was 17 when I was diagnosed and I just didn’t want it , I dint want to say anything to anyone, however in time I did learn keeping th8ngs “ bottled “ up only added to the problem , stress levels tc. Being newly diagnosed is “ minefield in the beginnings but it does get easier , and places like this and talking to some health professionals clan help too.
talking to other diabetics can help dramatically cos you can guarantee we’ve all been through hat your daughter is going through, The more your daughter talks to someone ( best friend , who ever) the quicker she will get back to normality, and contrary to popular belief type 1 diabetics can lead a healthy and “ normal” life.
 
In the early days there is a lot to take in. Many appointments and a grieving process to work through.
Getting back to normal is good - as long as she can do it safely. If she is accepting her diabetes and treating properly then she’s well on the way.
She may just not be ready to talk to others yet.
 
She wont be the only T1 at her university. If she has a health centre on campus she can enquire about linking up with others. Also Student Services are incredibly helpful with information and pointing in the right direction. There might even be a T1 support group already and I imagine she would feel better talking to other T1s her own age. Good luck and you are a lovely auntie.
 
I would say give her time to 'grieve' for her old life before suggesting joining a club or saying what you think are helpful things about 'coming to terms with it' and how she'll get over it or be able to lead a full and happy life, etc. All of that is true of course and it's important that you don't just leave her to get on with it when she is clearly struggling with such a diagnosis BUT she is 19, she has just been told of a serious life changing condition that she will have to have foremost in her mind before she can do anything for the rest of her life. You are talking a week or so ago. I would keep up contact with her and simply say that you are there to support her whenever she needs you. Of course she wants to return to 'normality' and she will but at this stage I am sure it has come as a complete shock to her and the last thing she wants to do is announce it to the world every 5 minutes (ie friends & family) as she knows they will all want to know the ins & outs.Wait until SHE is ready. x
 
Give her some time then encourage her to speak to others also going through it. Theres a lot of information she will need, so she can prepare and understand the changes she will need to make. Its a lot to take in at first, I worked with someone that also has type 1 and they were a great help, told me all kinds of things I had no clue about, for instance having to reapply for your driving license more often than a non-diabetes sufferer. Its important she gets the info she needs
 
I was diagnosed at 43 and found anonymous forums (this one) hugely helpful, whereas people in real life tended to fall into 3 categories:

1 - i know someone with diabetes and they are fine so don't know what your problem is
2 - at least it isn't cancer (not hugely helpful at the time)
3 - major panic. Telling me what I should or should not be eating / doing etc

None of the above was useful! Supportive can just mean asking how someone is, but not telling them to do x,y,z. Perhaps email the link to this forum, say it looks useful and then back off?
 
To Lauram16,

Hopefully you get a chance to read this, this is my first ever post on here and I hope it really helps out. I was newly diagnosed as type one shortly after my 18th birthday and right before Thanksgiving. It can be a very hard change and hit me like a freight train. I can understand what you niece is going through, and it can be incredibly confusing.

I can not speak for her or put words towards how she is feeling, but I can tell you about how I felt. At first I was incredibly sad and felt isolated. I didn't want to talk to anyone and I was scared to tell people about it. But shortly after I realise that's what friends are for. Friends are there for you at your darkest times and will always be around to help you and love you when you need it most. I wish I had told them earlier. While it can become annoying having to explain to them certain things like low blood sugar, they will also listen intently and try to understand as best as they can, because for starters they are not you and can only understand how you feel as best as you tell them.

Some words of advice I would give your niece would to just be yourself. Do not let you diabetes control you and become you. While it is a large part of who you are it is not everything you are, and you should learn to live side by side with it. You will have it for the rest of your life and you must learn to be ok with it. I currently go to college and when I go out to the bars or out to a party people always ask me about it. I always thought about making a card just to hand to people, instead of having the same speech over and over again. I realised this was instead a good time to educate people on something they might not understand, such as I can have as much sugar as I want, but it's about the balance.

I understand that she is fairly new to this and it can take some time to realise these things, simply be there for her and ask her what she needs, and sometimes it's ok to just want to be left alone. I am currently 21 and I have been diabetic for three years. It's not something that happens overnight you just don't fix everything and understand how it works, Rome wasn't built in a day. After three years I am still working on it, but have gotten my A1c down from a 13 to a 6.4 and still going. It takes time and one day you will realise it becomes like second nature.

Tell her to reach out to her friends they are only there to help. Sometimes I find that I do feel isolated because I don't know anyone with type 1 or diabetes in general. Thats why I'm on here. I don't even live in the UK I live in New Jersey in the United States, but it is nice to have people to talk to and realise that there is a large part of the world who feels and has the same problems you do.

Sure it is a chronic illness and will never go away, I thought my life was over when I got my diagnosis. But, now I'm 21 I frequently go out to bars (and drink) with my friends, I have a loving family, a great set of doctors, and a girlfriend that I couldn't live without. And while sometimes they may not understand me and what I am going through, they are always there for me.

I know I don't have a picture and my profile is not the most complete, but I hope that this still helps. Tell your niece to reach out to those around her and maybe you could take some classes to try and understand better as well. It only gets better when you try your hardest, and it's gonna take alot of work.

If you have any questions or still want to talk about anything please feel free to message me.

Sending a hug with this,
JTSilver98
 
Aw, that’s hard for her, I was diagnosed myself as a student, some 22 years ago now. Luckily for her, things have moved on a lot with the support we can have from university, I ended up having to walk away from my PhD because of it (insulin then wasn’t great, and we didn’t have the tech available that we do now). At the very least, she should contact the disability office at the uni, because she can get a number of exam concessions, and we’re protected against discrimination, and given what we need to study effectively. For example (I’m at uni again as a “mature” student) - the ability to take food into an exam, extra time to allow for blood tests etc can take some stress off. I’ve just been awarded Disabled Student Allowance - a laptop with assistive software, so if I need to deal with a high or a hypo And can’t concentrate, or leave a lecture to change my pump, it’ll read notes back to me, and transcribe audio. Very handy. I also have the budget for a small insulin fridge awarded if I need to be away from home on placement, although they are supposed to keep me commutable from home if possible. Just little things that put us on a level playing field. I’ve also got regular meal breaks as part of my placement shifts, but I’ve not needed to use that, I’m happy to eat whenever. I’m also allowed to wear my watch at all times as I use it to monitor my sugars and control my pump, in contravention of the healthcare “bare below the elbow” policy. I’ve made sure I can easily disinfect it though!
 
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