Does anyone else feel isolated at times?

[hhannahh]

Hi everyone,

I wanted to ask some advice on helping friends / loved ones understand (as best they can) what it's like to be type 1 when it's something of an invisible condition.

I developed T1 quite late (aged 27) and after a brief stint in hospital after being diagnosed came home and tried to get on with it as best I can. I've managed it okay - ups and downs of course, but decent Hba1c results and good control on the whole.

Thing is, after a few years of this, and looking and largely behaving the same to friends and family, I feel like the condition is starting to take a bit of a toll and I'm not quite sure how to articulate this. Externally I appear to be the same person I suppose (though I'm not shy about injecting / testing around anyone!), and everyone says how glad they are that I seem to be managing, which is thoughtful. But there's quite a lot of work that goes on underneath - carb counting, calculations, taking care around exercise, general stress, carrying equipment, prescription management, mitigating special occasions like Christmas, etc etc... and sometimes it seems like all that work, along with managing any wobbles, makes me feel a bit isolated from them. And I'm not sure how to go about talking about it without sounding sorry for myself. I wondered if anyone has experienced anything similar?

Thanks for reading this

 

[Scott-C]

People around me, family, friends, work mates, have always been very understanding.

I suppose it depends on how much you tell them.

As you know yourself, it ain't that easy to manage.

A lot of non-T1s think, aye, ok, no bother, just a bit of insulin for each meal, nae problem.

I don't shout about my T1 at all, but I've been playing around with cgm for the last few months and, just out of the sheer novelty of having bg levels pushed to my phone/watch, I've been telling people about it and why it's important for me to use it so I can keep in range as much as possible.

The surprising thing is that they're actually interested in it - some of them have T2 relatives, others say, Scott, I really didn't realise it was that difficult, respect.

Don't be shy about this at all. It is invisible to an extent, but I'm never slow to say, aye, that's a nice looking bit of cake, but I'm going to pass on that.

 

[Juicyj]

I get how you feel @hhannahh I tend to think it's an invisible condition as to friends and family I look 'normal' but inside there's a whole lot more going on, I have gone through many emotions with this, starting with wanting to be invisible myself, then wanting to tell/show everyone, to can't be bothered to say anything to anyone, and to present state which is to just tell folks if I need to. I had an odd moment today clearing out my medication drawer which is full of spare meters, lancets, strips, ketone sticks, pens, pills, urine bottles etc etc, I did have a moment of 'can't believe I've made it so far'.. But day by day I have and as time has gone by its got easier and more manageable. I think if you accept that how you feel about this will change over time and it will get easier then hopefully you can gain comfort from this. You have a ready made support team here of folk who know what it's like, try talking about just some micro elements of this with family and friends like what your last Bg result was like, that may help you to off load a bit.

 

[phdiabetic]

I think there's no solution...they won't REALLY understand what it's like unless they live with it. Just let them know when you need some extra support and what they can do for you. I can't really tell you what that is since it's different for everyone - maybe you want them to read up about T1D, or visit the doctor with you (perhaps to learn about glucagon?), or just let you rant to them when you're having a bad day. If there are certain people you KNOW will not understand, or will try and argue with you about it, don't tell them! I really regret telling some people in my life about diabetes, although unfortunately when you have to test/inject/do diabetes stuff all the time it's hard to keep it a secret.

 

[Kazza63]

I am like you and feel isolated. I don’t think people do understand the daily struggle you have to keep things going in the right direction. I’m the type of person who just gets on with things so u suppose some of it is my own fault because people don’t actually see how tough it is and don’t understand. I’m lucky that my best mates daughter is T1 so he gets it. Maybe we should talk about things more and educate those people close to us and maybe then we wouldn’t feel so isolated. Hope things improve for you. Keep using the forum as we all know what it’s like and can offer support

 

[Fairygodmother]

I’ve always felt a bit isolated. In the early days I felt very alone: my immediate family were less than helpful, my sister was even cross with me because I wouldn’t let her inject me with insulin when I was hypo. Beggers belief! The rest of them just didn’t get carb assessing at all. Now, 48 years later, my husband’s anxious that I’m ok when I’m out and haven’t texted for a couple of hours and while I appreciate it I also feel over-watched. My friends are still largely unaware of the constant work that goes into maintaining a healthy self, and one of them even seems to find it difficult to distinguish between carbs and Cals.
That’s why this site is so good! It’s full of people who know what it’s like!
Have you seen Snapsy’s words on what it’s like to live with T1?
I also wonder how much I know of the ways my friends, my husband, my daughters and everyone else is working to maintain their own equilibrium.

 

[Fairygodmother]

Just another thought - way back in the day R D Laing said ‘I can experience you, you can experience me, but I can’t experience you experiencing me’. Struck me as obvious - and I don’t go along with his idea that we’d all be better with daily LSD, but seems apt here.

 

[Babyweed]

I was diagnosed a little over a year ago aged 50 I live alone and although I have to text my sister each morning and she phoned me each evening which quite frankly drives me mad. I know she cares but has absolutely no understanding and at times makes things worse. My son is t1 but lives 200 miles away so yes I feel isolated but so grateful I found this forum because it has help no end.