‘I’ve been compliant,’ I said to my ophthalmologist with great pride. ‘Compliant’, I said again and smiled at him and waited for a pat on the back. It didn’t come. So I tried again, emphasising my point. ‘Four times a day; both drops in my eye. Just like you said. Didn’t miss a single drop. I was com-pli-ant.’
If there is a word that is evokes rage in me it is compliant. When used in terms of diabetes management, it makes me see red and start imagining the painful things I’ll do to the person using the word. Actually, it’s usually used with the prefix ‘non’ to give the word noncompliant which is even worse.
At the World Diabetes Congress last year, Twitter nearly broke thanks to a group of DOC renegades sitting in a lecture given by a doctor who insisted on using the term ‘noncompliant diabetics’ to illustrate the point that some of his patients were having difficulties following their diabetes treatment plans. There we were, non-compliant diabetics because we couldn’t keep our BGLs perfect and follow the rules and do the things we ‘should’ do and, you know, do it all with a smile. Bad, bad, BAD diabetics. This photo shows how happy I was:
So with this hatred of the word, why was I bandying it about in front of my ophthalmologist like there was no tomorrow? And saying it so proudly? And frequently?
The answer is quite simple. Following the treatment plan I’d been given after my cataract surgeries was easy. Two different eye drops; four times a day; for 4 weeks. Then it was over. It was something that, for me, was manageable. There was a point where it would stop and then I wouldn’t have to think about it again.
The complete opposite of living with diabetes where there is no end point and no time where a box can be ticked and it will all go away. It was so lovely to be able to do something that was predictable, easy, knowing that there would be a time when it didn’t have to happen again.
Understanding the relentlessness of diabetes management is difficult to communicate. I don’t really expect people to truly appreciate what it is that is so frustrating and annoying and challenging. But I do expect a little respect and a little acceptance when things are not going to plan. I also think that using judgemental words that suggest that there is a deliberate attempt to ‘break the rules’ is unfair and lacks any sort of comprehension about a condition that never goes away.
Perhaps my delight in announcing so loudly and proudly to my ophthalmologist about how clever and bright and shiny I’d been with my eye drops was because for once I felt like I was actually doing something right when it comes to my healthcare. Perhaps I needed recognition (probably more from myself than anyone else) that I could follow directions and get the desired results. Perhaps I just needed to believe that I was doing something that would result in predictability and a satisfactory outcome. Diabetes doesn’t ever provide any of those things. No matter how compliant you are.
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January 29, 2014 at 6:06 pm
meltwicediabetes
Great post Renza! I say I’m compliant with my thyroid meds, I take the tablets each day just like the doctor says and the outcome is….normal thyroid levels, but compliance just doesn’t mean anything in relation to type 1 diabetes management. As you say there’s no set of rules you can follow to guarantee normal sugars and I would actually challenge a doctor to come up with a regime that would go anywhere near describing all the things I do and all the mental gymnastics required to achieve decent control.
At last year’s World Diabetes Congress I became a fan-girl of Prof. Jay Skyla who said he preferred the term “infinite creativity” to intensive insulin therapy and I was like “Yes, finally somebody gets it!” creativity is the term I’ve used to describe all the things we do to achieve close to normalish sugars, have never heard a Dr use the term before.
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January 30, 2014 at 9:35 am
RenzaS
Thanks Mel. Yes – I am constantly amazed that people think that there IS a rule book when it comes to diabetes. As someone much wiser than I tweeted at the conference, ‘It’s not me that’s non-compliant, it’s my pancreas’ (thanks to Kerri Sparling for that!).
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January 30, 2014 at 2:05 am
StephenS
Love this post. You really described the C word exactly how we see it. Thanks
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January 30, 2014 at 9:34 am
RenzaS
Thanks Stephen. It’s a nasty word!!
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January 30, 2014 at 4:45 am
Heather Gabel
amen sista.
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January 30, 2014 at 6:08 am
Kim
Preach! This makes perfect sense to me. (And I am digitally patting you on the back.) 🙂
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January 30, 2014 at 9:36 am
RenzaS
Thank you – gratefully received back pat!
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January 31, 2014 at 9:51 am
Trevor Stuart
outstanding post Renza!!
My other pet hate is “suffer”. I do not suffer from T1D … I get on and live with it 🙂
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January 31, 2014 at 4:52 pm
Sara
I think the most interesting part of this is how easy it is to be compliant to something that has an easily identifiable ending. Great post!
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February 4, 2014 at 7:16 am
Best of the Betes Blogs: January 2014 | Unexpected Blues
[…] Post by a Type 1 – Renza at Diabetogenic We all have trigger words. Renza talks about the word ‘compliant’ and it’s derogatory connotation for her as a […]
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