Words of wisdom on diagnosis.

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!”.

top 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 <www.diabetes.ie> or their helpline 1850 909 909.

And there’s this group of young adults in Australia   called Reality Check <www.realitycheck.org.au>. 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 info@diabetes.ie