There was an interesting post in the diabetes blogosphere this week by a paediatric endocrinologist in the US. She tells the story of a young woman whose A1c didn’t match the numbers in her meter download. It turned out that she had found a way to manipulate the meter into giving false readings that, as it turns out, were all in target. I love that this blog is incredibly sensitive in dealing with these issues and there is no judgement directed towards the young woman in the story.
One of my biggest frustrations as a – often the only – consumer representative attending scientific conferences is the constant remarks about ‘non-compliant’ patients or snide remarks about false numbers in log books. Or the complete absence of logbooks.*
I have often wondered if the questions shouldn’t be about why the patient isn’t telling the truth but rather why they feel they can’t tell the truth.
I also don’t think that we should be pointing fingers and saying people who do this deserve everything they have coming to them and if they wind up with complications it’s their own fault. Really? Let’s dissect that for a moment.
I am pretty certain that no PWD who is not being completely truthful about their numbers is ever thinking ‘I am doing this because I want to get diabetes complications’. I am sure that as each day goes by without a consideration to diabetes – no BGL checks, limited boluses, food they are told not to eat etc – the PWD is not thinking ‘Goody – I’m a day closer to diabetes complications’. I am also sure that they are dealing with guilt, confusion, feeling physically below par and incredible frustration. They probably also feel isolated and don’t know where to turn. (Well done to Shara, the endo who wrote the blog, for referring her patient to a counsellor and actually spoke about the burden of diabetes. And thanked her for being honest.)
Let’s also for a moment just remember that blaming people for developing complications is really unfair. Yes, we know that by keeping our A1c under 7% we reduce the chances of developing diabetes complications. But keeping that A1c under that magic number all the time is incredibly difficult. So many things can throw off even the finest of efforts – stress, a virus, faulty insulin, a personally or professionally difficult time are just a few reason why.
And there are people for whom complications still develop despite doing all the things they’ve been told would help reduce the risk. Sometimes, it still happens.
I have an endocrinologist who was either born without the judgement gene or has simply beaten it out of herself (or perhaps had patients beat it out of her). I never feel judged by her. And for that reason, I feel that I can be completely honest with her. I can tell her that I’m not doing great and not checking my sugars as much as either of us would ideally like me to be.
I contacted her after my recent miscarriage to let her know what happened and said I’d be in touch. I didn’t call, A week or so later, she sent me a message saying that she’d had a cancellation this week and could see me. I could have made up a million reasons as to why I couldn’t go – work, family, too busy, not available at the time. Instead I simply said that I needed some time to regroup and I’d call her when I was ready. That’s how I feel. That’s the truth. And when I see her I’ll tell her more of the truth, which is after 13 weeks of intense diabetes scrutiny, I’m taking a break. I’m not checking my BGLs 20 times a day as I was (even while wearing a CGM constantly) so I’m not doing a heap of micro bolus corrections throughout the day. Right now, diabetes is not something that I particularly care about because I am grieving and just trying to get through the day. I bolus for what I eat, I have a constantly full reservoir and I am changing my line every 3-4 days as usual. That’s all I can do. It’s enough.
Another huge frustration for me is judgement from other PWD. We are constantly rallying against judgement from HCPs or people who know nothing about diabetes. In my mind, that intolerance of diabetes judgement extends to PWD. Can anyone honestly say that they live a perfect diabetes life and always have done so?
No? Then how about you check your judgement at the door? How about we ask the question why people feel unable to tell the truth? How about we consider the emotional state of the person behaving this way and ask what help they need to be able to do what is required to live a healthy life with diabetes?
And how about we just support each other and admit that sometimes diabetes is so hard that showing up for a medical appointment deserves acknowledgement and a pat on the back.
*Here’s an exercise for anyone who has ever been judgemental about creative number-entering into log books. Get yourself a diary and for the next twelve months, write down every item of food or drink you put in your mouth including the quantity. No cheating, no exclusions, no forgetting. Every single thing, every day for a year. How hard do you think that would be? Now imagine that you have do to that and show it to someone. How would you feel having to show someone the day where your whole diet consisted of a bloody mary for breakfast and an ice-cream sandwich for dinner? Actually – the three days in a row that you did that. Now do it for life.