Do Others See My Diabetes as a Weakness?

This year, in particular, my diabetes is more apparent than it ever has been before. I started wearing an insulin pump in May, and intermittently use the FreeStyle Libre to monitor my blood glucose. I more actively manage my blood sugar levels than I once did, which means I rarely leave the house without my meter and skittles. I tend to my diabetes quite a lot through the day, and I am very conscious of it.

Which is why the very first question during last week’s OzDOC chat really struck a chord with me. What are the high lights and low lights of being open about my diabetes in real life?

For me, one of the low points is definitely my perception that others might see it as a weakness. It’s stupid, really, because why should I care about what other people think? Yet those thoughts still sit there, on the edge of my subconscious, every time I need to pause and tend to diabetes through the day.

Every time I swipe my FreeStyle Libre up against my arm. Every time I pull out my pump, staring at it for moments on end while deliberating over a correction bolus. Every time I’ve got my phone in hand at the dinner table (and feeling extremely rude for it), calculating carbs or searching through Calorie King. When I spilled my container of skittles on the floor in the shopping centre last week while I was trying to treat a hypo, scrambling to pick them all up (thank goodness I had a spare!).

For the most part, I definitely don’t feel that diabetes as a weakness. When I reflect on my life, I don’t feel that it is significantly weaker because I live with diabetes.

Sure, it’s work. Hard work. It effects every single activity that I undertake. It’s intrusive. It’s frustrating. It doesn’t always go right. It does interrupt my day. I get angry and sweary and pissed off. If I’m lucky, it will even disturb me while I’m asleep. It’s fair to say we have our moments. 

Yet as strange as it might seem, most of the time it is just something that I have to do alongside eating and sleeping and working. Half decent management doesn’t simply come from accepting defeat.

I guess, naturally, people don’t know a lot about diabetes. Neither did I, in the 17 years before I was diagnosed. I don’t really know how I can change that.

The high point of being open about my diabetes would definitely be its conversational value. It does give you something interesting to talk about. And I do feel a little less “weaker” when the people around me know what I’m doing. 

I can only hope that by being open about my diabetes, I am not feeding those perceptions of weakness. I can only hope that by continuing to talk about it, others will see it as the ordinary that I do.


Making the Leap into Private Diabetes Care

I am extremely grateful for the diabetes care I have had access to over the past six years. The diabetes clinic at my local public hospital has given me access to every kind of service I could ask for manage my diabetes. All completely free of charge. Unless you count parking. Parking is a pain in the ass.

By far, the most amazing part of that diabetes clinic was my amazing Diabetes Educator, Gwen. Yeah, appointments were often as far as three months apart. Yeah, there was a gap in the middle of those six years where I probably should have kept in touch but didn’t. But Gwen was always there. She was always available by phone and by e-mail. She listened to me. She was someone I could rely on. I wouldn’t have wanted anyone else to support me as I began insulin pump therapy in May.

She retired several months ago.

In the last couple of weeks, I feel like I’ve lost my way. I no longer feel like I can achieve consistency day to day. I mean, I know I’m doing all the right things. Writing things down. Trying to take note of patterns. Checking my basal rates. Eyeing insulin to carb ratios. But none of these things seem to add up to consistent trends in blood sugar levels after eating.

I so wish I could call Gwen right now. All I want is someone to talk this over with. Someone who’s brain isn’t screaming diabetes, diabetes and more diabetes.

The high point of last week was a hba1c result that I had worked damn hard for. The low point was the diabetes education that went with it.

I’m a very hands on person with my diabetes management. Okay, maybe even a little too much of a micro manager. But the advice I received last week was very textbook. I didn’t feel that I was being listened to, nor did I feel that the way I choose to manage my diabetes was supported.

To be fair to this educator, it would have been difficult to give advice to someone who she had only met for the first time. Let alone in the space of a 30 minute appointment on a busy clinic day. Gwen was never replaced after she retired, which has meant a revolving door of whoever’s free to see me on the day I come into clinic.

However at the moment, I need better. I deserve better. I need someone who I can build a relationship with. I need someone who has more time for me than a busy and understaffed clinic in a public hospital allows. I need someone who will listen to me, and be supportive of my approach towards managing my diabetes.

The icing on the cake was being told that it would be okay for me to let my a1c creep back up a little, because that’s all I needed to avoid long term complications.

This is something that has weighed on my mind for some time. I have decided that I want to make the leap into private diabetes education.