With my twentieth diaversary in the bag (thanks to my gorgeous husband who organised a surprise breakfast get together with some of our most loved on Sunday morning!), I’ve been thinking about what I wish I’d known when I was first diagnosed.

To be honest, I don’t know that many of these things would necessarily have made sense at that time, but perhaps it would have been a useful little cheat sheet to have to keep coming back to.

Obviously, this isn’t an exhaustive list. I expect that if I wanted to, I could list hundreds of things I wish I’d known. But that would make for a really long blog post, and I need a coffee. So these are the first twenty things that flew out of my head and onto the page.

It’s worth noting that most, if not all, the most meaningful and important things I have learnt have come from others living with diabetes. So with that in mind, please feel free to add your own. Because I know I have a lot more to learn.

  1. Diabetes is not who you are now. It is something you have, but it is not who you are.
  2. Ask for a referral to a psychologist or counsellor. Even if you don’t need it right at this moment, you may in a week, or a month or a year. Or not at all. But know that there is someone available to you to talk about life with a chronic health condition who can help you understand what that means for you. Unfortunately, this is often the one healthcare professional you’re not introduced to at diagnosis.
  3. There is no right way to do diabetes. There is just your way.
  4. Your diabetes; your rules. It may take you a while to learn what that means. You may change the rules. That’s okay. It’s your diabetes.
  5. There are other people just like you. I don’t mean only in the pancreatically-challenged way. I mean they too are dealing with diabetes but with the same attitudes and ideas as you. Seek them out and treasure them. AKA ‘Find your tribe; love them hard.’
  6. The HCPs you meet the first day you are diagnosed do not need to be your HCPs for life. Or even until next time. If you don’t feel comfortable or safe or understood, seek out those who are more aligned with what you need. (This may take you some time to work out. That’s okay. But you should never feel bad when you walk out of an appointment with a healthcare professional.)
  7. You do not need to eat that amount of mashed potato every meal, despite what your first dietitian may tell you. I wish that I had been told that there was not a single eating plan when I was diagnosed. It took me a while to work out that I could still eat the way I wanted while managing my diabetes. (And that will probably change over the years. That’s fine!)
  8. Technology can be your friend if you want it to be. You don’t need to use all the diabetes technology on offer, you can try it and decide it’s not right for you, or you can embrace it all and be a complete diabetes technology geek. Learning and knowing about it, and working out what is right for you is a smart thing to do.
  9. Do not read or watch tabloid news when they are talking diabetes. (And you might need to gently ask those you love to please not send you clippings from the Herald Sun about the latest way mice have been cured. Remind them you are not a mouse.)
  10. People with type 2 diabetes are not the enemy. I wish that I hadn’t been led to believe that there was a great divide between the different types. We have a lot more in common than differences, and together, we have a much louder voice.
  11. A withering glance and an eye roll may become your best defence against the ridiculous things people will say to you.
  12. Shortcuts are your friends. It doesn’t make you lazy. It makes you smart. (AKA – of course you don’t need to change your lancet every time you check your glucose levels!)
  13. It’s okay to hate diabetes sometimes. It’s okay to not be a superhero. It’s okay to feel that diabetes is actually stopping you sometimes. This doesn’t make you a failure. This makes you a person with diabetes.
  14. Control is relative. Diabetes control is elusive. Maybe remove the word control from your lexicon.
  15. Read diabetes blogs. That’s where the honesty is. Some will make you cry; some will make you laugh; some will make you cheer. But mostly, they will make you nod your head and feel like there are others in the world who understand. Really, truly, intrinsically, honestly understand.
  16. This is not your fault. Or your parents’ fault. Or because of anything you did. No one asks to get (any type of) diabetes.
  17. Don’t expect people without diabetes to truly understand what you are going through. They don’t need to (remember how little you knew before you were diagnosed) and it’s not really fair to expect them to truly ‘get it’. It is okay to expect them to be polite and non-judgemental. Feel free to point out people’s lack of manners if they say something ridiculous about diabetes. Or ask if you should be eating something.
  18. Some days, the best way to deal with diabetes is a Netflix binge, your favourite foods and the sofa. You’re not giving up – it’s called self-care.
  19. Learn from those who have gone before you. Find people who have lived with diabetes for one, five, ten, twenty, fifty, seventy years longer. Sit down with them over a cuppa and listen to them tell their stories. It will be the best thing you can do.
  20. Be kind to yourself. Really. Be kind to yourself.

And one final point for good luck – make diabetes as delightful as you possible can. Sometimes, it’s just such an ugly thing to have to deal with and any way to make it more fun or sexier or prettier is just what you need to get you through the day!

Some awesome folks making diabetes more fun to live with:

Casualty Girl on Society 6 for bags, t-shirts, phone cases and more

David Burren’s designs on Red Bubble for t-shirts, phone cases, stickers and more

Pep me up for Freestyle Libre stickers and medical alert bracelets

Rockadex for CGM and pump tapes and more

I Have the Sugars at Teepublic for t-shirts.

 

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