Has anyone heard of THIS many people with T1

Snodger said:

Noblehead/Nigel,

that's very interesting. It's a theme that is coming up again and again in my interviews. I'm coming to the conclusion that having a period of 'denial' is actually so common to people's experiences of Type 1 that you could almost call it part of the normal progression of the disease. I think it's particularly true of those who have to go through their late teens with type 1 and have to work out how to live with the disease as well as trying to be a 'normal' teenager/young adult. Does that fit with your experience? How old were you when you were diagnosed?

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'Does that fit with your experience'............................100% yes!!!

I was 18 years old, not very well controlled and more interested in having a good time doing the usual things young men do at that age. I might also add that clinic appointments back then would meant allowing 2-3 hours of your time, I would take time off work to allow for what should be a 1 hour appointment and arrive back 2 hours late, so this didn't help in my decision to attend clinic appointments.

Thankfully now appointments are much quicker, and with hindsight I regret not attending appointments back then, but so much has changed in my time and the knowledge, treatment and equipment we now have to hand means we are much more involved in our own care, but would stress to anyone old or new to attend clinic appointments regularly, as certain checks need to be carried out such as a1c, kidney function and eye/feet health.

Hope the above has been useful in your research!

Nigel

yes, definitely, thank you, and also Debloubed for sharing your experiences. Am very interested in what others think if anyone wants to add their thoughts too.

Hi Snodger,

Sorry it took me while to reply. Definately good luck with the paper.

My experience, if it will be any help, is a mixture of all the other posts. I was diagnosed at 21 so not a teenager but a young adult and I spent a year of misdiagnosis and being made to feel like a hypochondriac before finally being told i was diabetic. Since that time I have been given a whole host of contradictory information and often bad advice so my confidence in the medical proffession was not high. Secondly, I do feel guilty. I feel I have failed if my HBa1c is not good. On top of this, people who know you are diabetic constantly say "oh you shouldnt be eating that should you?" etc so if you do have the odd treat, even though you are covering it with the correct insulin you feel bad. And thirdly during visits to the clinic when you tell them you have problems youa re often told "its common for diabetics and there is nothing you can do other than to maange your control better".

Not to forget of course that Diabeties medical care is relativley new and is constantly changing and improving so often this becomes very confusing and scary. i would imagine this is certainly a problem for the elderly so maybe this is another reason people dont attend.

I do and alway have attended but I can see why some might not want to for these reasons.

Hope it helps and good luck.

thanks maryrachel,

that's another good point actually - that clinic can be an unrelentingly negative, depressing, anxiety-filled event. One of my interviewees made me realise that sometimes it can be better for your health not to go, because sometimes you just have to look after your mental health as well.
I have learnt some interesting things from a couple of the people in my study who actively like going to clinic. One likes it because her experience has been so positive and friendly from day one and she actually enjoys meeting the doc/nurses. I don't think her control is any more perfect than the rest of us, she's just been lucky with the personalities and advice from her healthcare team. It shows you how important individual doctors' attitudes can be.
Another one who was very keen was a very goal-driven man who actively liked being set targets and enjoyed trying to meet them, so again even though he wasn't necessarily getting ideal HbA1c he saw it as a challenge to get there. Wish I could see it like that!

snodge