It’s been many a year
since I was diagnosed as a young one with type 1 diabetes and over the years I
have heard some valuable advice that I wish I had been told when I was
diagnosed that would have caused me less stress.
I’m taking an excerpt
from the Irish version of the Starter Kit; a guide for adults with type 1
diabetes in the hope that people today who are newly diagnosed will be saved
the stress and that this information will help the find the path to “I can do
this diabetes thing!”.
10 things we wish someone told us the day we were diagnosed:
1. It’s not your fault.
Type 1 diabetes is an autoimmune condition. Something
goes whacky and your immune system gets confused. It gets this idea in its head
that the very precious islet cells in your pancreas that produce insulin are
actually a virus and it turns on them and kills them. We don’t know exactly
why. But we do know that it has absolutely nothing to do with what you ate,
where you live, who you are or whether your mam stood on her head during pregnancy.
There is a genetic link but it’s only one piece of the puzzle - even if your
mam or dad had Type 1 diabetes themselves, there’s only about a 5% chance you’d
have got it.
2. You’re not a freak!
Getting Type 1 diabetes when you’re in your 20’s,
30’s, 40’s or even 60’s is way more common than most people (including doctors
and nurses) realize. Type 1 was called juvenile diabetes for many years which
was misleading. So if someone says “ooohhhhh you’re old to get Type 1!” You’re
not alone, and they’re wrong! Half of people with Type 1 diabetes are
diagnosed as adults.
3. You’re not alone.
20,000 people in Ireland have Type 1 Diabetes and with
the popularity of the internet and social networking sites such as FaceBook and
Twitter you should not at all feel isolated. There are support groups for
adults with Type 1 Diabetes starting up all over Ireland. Diabetes Ireland
would have contact details to find out if there is a group near you, they also
offer support and information to people with diabetes through their website
> or their helpline 1850 909 909.
And there’s this group of young adults in
Australia called Reality Check
>. Their website has a forum where you can post any
question, read other people’s experiences and really tap into what it’s like to
live with diabetes and what real, normal people do.
4. Insulin is not like taking a pill each day.
You’ll learn how to change the doses, sometimes every
day or every hour, to cater for different things going on. But it’s definitely
not a case of here’s your insulin, take X units, go home and you’re on your
own. Pretty soon you’ll start to get the hang of balancing your insulin dose
with how you eat, drink and play - which changes every day, of course.
5. It’s bloody
hard work at first but not the end of the world.
People with Type 1 diabetes have won gold medals (Gary
Hall Jnr in the US and Steve Redgrave in the UK), play professional football
(Gary Mabbutt), won Oscars (Halle Berry), sung to thousands of people (Marcia
Hines, Nick Jonas) and even won Miss America competitions (Nicole Johnson).
We’ve backpacked the farthest corners of the world, got awesome jobs, become
millionaires and politicians. And then there are the rest of us normal people
who go about our lives doing what we want and making diabetes fit in there.
You’ll be grand!
6. It’s actually impossible to keep blood
sugars between 4 and 8 all the time.
Really truly! Those numbers were given to you as a
guide and the aim of the game is to keep them there. However, until you get
yourself a new pancreas, it is just impossible to not get the odd high or low
(or lots of them on a bad day.) Highs and lows make you feel crappy enough
without you feeling guilty that you’ve stuffed up too. A good tip is to just
think of the number that pops up on your blood glucose meter (a.k.a. the blood
test lottery) as a Call to Action: if it’s high or low, just do what you need
to do, to fix it. But don’t waste your energy thinking, ‘Oh I’m bad, I’m wrong,
I’m crap.’ Just fix it and get on with life. (Or if you’re not sure what to do,
phone your diabetes team for some help.)
7. Research is moving ahead at an amazing pace.
You’ll hear a lot about ‘the cure’ for diabetes and
while it’s still a little way off, the word on the street is that research has
made more progress in the last 5 years, than in the 20 before that. We’re
seeing it with better technology and developments all the time. Chat to someone
who had diabetes in the 1950s if you want to feel better about your lot - scary
glass syringes etc., not good, not good. The JDRF (Juvenile Diabetes ResearchFoundation
) website is a good source of news on research developments.
8. People say really dumb stuff.
You will find that everyone you meet now has an Aunt
who had diabetes and either had some amazing home brewed solution to cure it,
or died. Just brace yourself that people get weird when they don’t know what to
say. We’ve all had times when we want to punch a person who doesn’t have
diabetes. It’s the kind of thing you really can’t totally understand unless
you’ve got it. So start perfecting your ah-huh, patient nodding and fast exit.
(We’ve also included a couple of copies of a one-pager here that you can give
to friends and family to save you turning into a broken record.)
9. Diabetic Chocolate is not an alternative for
people with diabetes.
I know that’s a shocker! People assume that if the
label says ‘diabetic’ that the contents may be beneficial. Since ‘diabetic’
foods tend to cost more than conventional counterparts or sugar-free and
reduced sugar versions this is in effect conning people with diabetes. Diabetic
Chocolate – “is sweetened with alcohol sugars, which can cause fluid to build
up in your bowels, which can then cause diarrhoea” (Margot Brennan, consultant
dietician at the Auburn Medical Centre, Dublin).
Go for normal chocolate in moderation and save
yourself the pain!
10. Pepsi MAX is the best sugar-free coke. Diet Coke's pretty good too.
The Starter Kit is available for free to download from http://www.diabetes.ie/wp-content/uploads/2012/02/T1-Starter-Kit.pdf or by contacting Diabetes Ireland on LoCall 1850 909 909 and email firstname.lastname@example.org