‘How’s that working for you?’
‘Sorry?’
I’m at Parliament House in Canberra preparing for a type 1 diabetes and technology event being held later today. Walking through security, three security staff honed in on my upper arm.
‘Your patch, is it doing the trick?’
I was confused. ‘I’m sorry. Excuse me?’
‘Are you an ex-smoker?’
‘Oh! This? It’s not a nicotine patch. It’s a continuous glucose monitor. I have diabetes.’
I don’t know if they believed me. I gathered my bag and moved on through the security area. ‘Diabetes,’ I said again. ‘It checks my blood sugar.’
My invisible illness is pretty visible today.
I made the decision yesterday morning to site my sensor on my upper arm rather than my stomach. The last two sensors I have worn left my skin slightly irritated, so I though I would give the skin around my belly a rest. I also haven’t been thrilled with how long the sensors have lasted – the last two survived a mere 10 and 12 days which is not great when I have been known to get closer to three weeks. (I know, I know, they are meant to work for 7 days. But at over $80 a pop, I do everything in my power to make sure they last as long as bloody possible!)
Before I got to work yesterday morning, three different people had asked what the thing on my arm was. Once I got into the office, another couple of people asked (…don’t even want to remind you all that I work for a diabetes organisation…)
Waiting for a coffee at my local this morning, the barista asked about it and yesterday, at the cafe near work, I could see the people around me looking at my arm and heard them guessing what it was.
At the airport today, a security guard asked if it could be removed and then wanted to engage in a conversation about it, and the woman sitting next to me also asked about it.
It’s been very confronting.
I have never hidden my diabetes. I used to inject at the dinner table before starting pump therapy. And since using a pump, I pull it our from under my clothes to bolus, or see my CGM graph without a second thought. I check my BGL whenever and wherever I want.
But while these diabetes chores occasionally attract a comment, it is nothing like the last two days.
I found myself sitting at lunch today with my right arm cupping the transmitter and sensor to hide it from view. I’ve been cursing the beautiful weather that means I don’t need to wear long sleeves to cover the device. And I’m terrified that people think I am wearing it on my arm to attract attention.
I have always been able to see the pros and cons of having an invisible health condition. Sometimes, the fact that there are no obvious signs of diabetes means that people don’t understand how significant a role it plays in day to day life. But the flip side is that it can be neatly packed away; it can be private. I actually love that about it.
But right now, I don’t have that luxury. Right now it is out, loud and proud for all to see. And I am not comfortable with it at all.
4 comments
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October 20, 2015 at 4:37 pm
Rachel
Hi Renza,
I could have written this article myself!
Started a sensor in my arm on Friday for the first time ever.. And have been experiencing the same attention, comments and feelings.
I’ve been diabetic for 31 years and I’ve never felt so exposed. The questions have been good however Today was the worst, the fruit shop owner said I should start taking ocker (some veggie plant) to treat my diabetes and stop insulin. Apparently the CGM is a money maker from big pharma.
Anyway, if I could I would rip it out of my arm and go back to being invisible but it’s only been 5 days and I need to get my money’s worth.
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October 21, 2015 at 7:21 am
skchrisman
We humans are a curious bunch, aren’t we? When I see the sensor on your arm all I think is “She’s gonna get great numbers from her arm site.” I hope you do!
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October 21, 2015 at 12:21 pm
danwarne
I felt ‘very visible’ going through Los Angeles airport the other day… Had to have FOUR patdowns by TSA officers because of my insulin pump and CGM. They were very nice and professional about it, but the 40 minute wait for the patdown team on one occasion wasn’t fun while my wife and little boy waited on the other side of the security gate. Five stars for my wife who managed to occupy my tired cranky little fellow while I stood with my feet fixed in the designated waiting spot for that long…!
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October 26, 2015 at 5:22 pm
Carolyn
I’m sorry but my smartness would be hitting super high after so many rude and yes they are rude.. I know I would end up saying in a dead pan voice it is an IV for my caffeine fix. I’d still say it in a cafe when having a coffee just to enjoy their reactions..
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