A long time ago on a Diabetes Facebook page that now seems far away...
The sky was always falling... Real conniptions were omnipresent... Shit was bananas... You name the panic, it was at the disco. We were ALL GOING TO DIE, like right now.
I am very happy to report that the sky is not falling and that we are all going to be fine. However, there was a time when you wouldn't have known that if you were a person looking for support (in some corners of the diabetes community), but that time seems to be changing more with each passing day. I couldn't be any more pleased to see it go or any happier to learn of what has replaced it. Maybe I should explain.
Living with diabetes requires support and finding that support online can actually be a huge and extremely helpful part of moving forward. There can however, be a downside; for example... What happens when you "arrive" online two days after the person that you are suddenly taking advice from? To you this well-meaning person seems sage like and you are apt to take their words as law. What happens when your new found guru is scared (as most rightfully are in the beginning) and at a loss for what to do next? Well, when they are afraid your understanding quickly aligns with theirs as it enforces your fear and uncertainty. That fear often imprints on you and all of your expectations and experiences going forward become tinted in that light. Now maybe you'll get lucky and log on while someone who is a little farther along the path is online and offering answers. In that situation the positive attitude and learnid experience that follow will lead you in a more positive direction. But what happens when twenty people offer their opinions in a thread and they all seem to be different - usually our minds will find truth in the feelings that we are currently experiencing. Basically, if the new person is scared, they follow the fear based answers and vice-versa. These initial interactions are, in my opinion, of vital importance especially early after diagnosis.
Many years ago I made it my personal goal to try and affect that part of our community. I thought that if enough newly diagnosed people felt empowered, understood insulin and began seeing positive outcomes sooner than expected, when it was their turn to give back to the community they'd begin from that position. I believe that when you have a bit of information, support, perspective and a reasonable yet positive expectation; you are well on your way down the path that leads to a healthier and happier life with diabetes.
Basically Instead of...
Q. I'm seeing mealtime spikes, what can I do?
A. Too bad sister, that's diabetes. You're screwed.
I was hoping for...
Q. I'm seeing mealtime spikes, what can I do?
A. Have you tried to pre-bolus? Tell me more about the starting BG when you ate. Don't worry this is easily fixed by understanding how insulin works - you're going to be fine!
I wanted to change the perception that all is lost and there is no way out because I don't believe that and it is simply not true. In my experience the sooner you have a meaningful direction supported by actionable facts, that sooner things will be okay again.
So I began to write blogs about ignoring fear, I talked more openly about how we manage, how insulin works and taking more control in endo appointments and while your children are sleeping and in school. I wanted people to have a chance to begin at the end. I thought this was possible because (do you want to hear a secret?)... largely confidence is one part preparedness and one part pollyanna. All you really need to begin to live well with type 1 is the facts and someone to stand on the other side of the room cheering for you with blinding encouragement. Recently I've begun to notice that those private Facebook groups that I spoke about are trending toward "yes you can and here's how" and getting away from, "dig a hole and climb in - you're cooked". There has even been a severe reduction in the posts that are designed to draw in people who are struggling so everyone can commiserate in a way that allows for them to give up. When giving up feels (and has been assured by others) like the only path left, struggles will follow. There is nothing wrong with a good cry once and a while but after that, back up, keep going, find a better answer than the one you currently have and put it into practice.
Of all of the things that I've tried I am particularly proud of a few Juicebox Podcast episodes that I see people talking about online. Every time that I see someone saying that they are being 'bold with insulin', my heart warms in ways that you can't imagine.
So thank you if you've been part of ignoring the fear and being bold and for sharing your strength instead of your anxiety, you are shaping a community that will help to form a new generation of what people living with diabetes expect from their lives. Happy Diabetes Awareness Month!