I know a lot about diabetes. So do those around me. It’s not by choice, I should add. It’s out of pure necessity.
And to tell the truth, I really wish they didn’t know so much.
I have never been one of those people who think that others without a connection to diabetes should know EVERYTHING about my condition. I find it interesting when I see people getting really upset because someone said something that was really off the mark and then the outrage that ensues. I actually don’t even expect my HCPs to know what it’s like to live with diabetes.
So the things I wish people did know are not the technical things. I don’t want or expect people to know how it feels to have a low or what constitutes a high BGL.
No. These are things I wish people did know:
• I wish people knew that diabetes is hard.
• I wish people knew that diabetes is a pain in the ass that no one wants.
• I wish people knew that living with diabetes is sometimes like having another full time job. But without the pay, annual leave or holiday parties. Or free stationery supplies!
• I wish people knew that diabetes can be paralysing at times. That the fear of the unknown can stop me in my tracks.
• I wish people knew that sometimes – a lot of the times – it’s not about diabetes.
• I wish people knew that it may look fun to hang out with DOC friends, but we are all doing a job when we are advocating and speaking at conferences and working together to raise awareness about living with diabetes.
• I wish people knew that diabetes doesn’t play fair.
• I wish people knew just how grateful I am to my loved ones who love me despite the burden of diabetes. (I really wish everyone knew that, but mostly, I wish my friends and family know it.)
• I wish people knew that as advanced as our technology appears, as smart as our pumps and meters claim to be, there is nothing even close to a cure on the market. Everything is still driven by me and my incredibly faulty thought processes. Which means that mistakes happen.
• I wish people knew that laughing about diabetes is okay; that the humour is sometimes needed to cut through the crap.
• I wish people knew that the diabetes experts are actually not those with pieces of paper on their walls. It is actually those of us who live with it every day.
• I wish people knew that diabetes can be embarrassing at times, because the urgency with which we need to treat a low, deal with a high, replace a pulled out pump line or run to the bathroom sometimes means we need to just STOP
• I wish that people wouldn’t compare diabetes with other conditions. Or other conditions with diabetes. And I wish that ridiculous memes proclaiming that diabetes isn’t as ‘sexy’ as other health conditions would go away.
• I wish that people had the choice to use whatever diabetes management tools they wanted and things like access, finances, geography and all other factors didn’t play a part in those decisions.
• And I wish that people wouldn’t judge others for whatever they chose to do.
• I wish people knew that forgetting to take my meter/hypo supplies, extra insulin or whatever else seems to live in my ever-expanding diabetes kit, doesn’t mean that I am nit caring for myself or not taking my diabetes seriously. It just means I forgot. I do that sometimes.
• And further to that, I wish people knew that no matter how lackadaisical I may appear about living with diabetes never, ever means that I don’t want to live a full and healthy life. See dot point one for why I sometimes may appear so apathetic.
• I wish people knew that diabetes is not a punch line.
• I wish people knew that no matter how charmed my life may appear as I seemingly swan around the world at conferences, hang out with the pancreati and have a job that I truly love, I would give it away in a flash for a life free of diabetes. And I wish people knew that I feel ashamed feeling that way.
• I wish people knew that rarely a day goes by where I don’t feel guilty about some aspect diabetes.
• I wish people knew that the media’s representation of diabetes is pretty much always wrong. Pretty.Much.Always.
• I wish people knew that kids with diabetes are going to grow up. So what they are told as children about their condition – what they are shown they can do – is critically important.
• I wish people knew that even though each year more and more people are awarded medals for living decades with diabetes, (perhaps making it appear something less worth celebrating), that it doesn’t make it any less amazing or special. These people deserve fucking ticker-tape parades!
• I wish people understood that complications are not an end point and that using them as a threat does not help anyone. I wish that we all understood complications more and spoke about them openly and fairly.
• I wish people understood that even though diabetes has made me strong, fierce and angry, I am, in equal measures, sad, scared and lonely.
• I wish people knew that I am really thankful they have taken the time to read about some of the ways I am affected by diabetes.