“10 out of 10 people with diabetes would prefer a fully functioning pancreas…” – the results of a small poll of the #DOC

“10 out of 10 people with diabetes would prefer a fully functioning pancreas…” – the results of a small poll of the #DOC
“10 out of 10 people with diabetes would prefer a fully functioning pancreas…” – the results of a small poll of the #DOC

Following a discussion on Twitter about Hypoglycaemia being a major concern of T1Ds in diabetes clincs, I thought it would be interesting to see how the online community felt about blood glucose levels and what bothered them most. So I ran a little poll on Twitter and the Diabetes.co.uk Forum

For the sake of clarity, this was a totally unscientific poll with no view of who was participating. The results may be skewed by there being T2s voting, non-Diabetics voting and anyone else voting. In light of this, the results make for quite interesting reading.

The three questions asked were:

  • How do you feel about and cope with Hypos?
  • How do you feel about and cope with Hypers?
  • Which concerns you more? Blood glucose levels below 4mmol/l or above 10mmol/l?
The options available for voting are shown on the pie charts below:
Around about 100 people responded to the survey, and the most important thing that we can take from this is that poll design is really important. 
The second thing of interest is that 68% of those responding felt negatively towards Hypos while 77% felt negatively towards Hypers. 
The other thing that the on-line community showed is that they are more bothered by high blood glucose levels than by low ones. 
So we can take from this that 10 out of 10 people would prefer to have a functioning pancreas. What we can also see is that amongst the online community, concern over high blood glucose levels seems to outweigh concern about low blood glucose levels. But as I said, this is a very unscientific survey. 
Why this is unusual is that it is rather at odds with what has been found by various healthcare organisations relating to quality of life (witness the HIN South London pre-clinic questionnaire that I have now had the opportunity to see, in which Hypos are considered a big issue). 
It suggests that those online are perhaps better at optimising the blood glucose levels to avoid the severe hypos that those offline see a lot and perhaps reflects the assertion that the on-line community is unrepresentative of the wider diabetic population. 
And if we look at the two different data sets, the Twitter respondents were more equally split with 54% being more concerned by going over 10mmol/l while 76.5% of DCUK Forum members were bothered by higher readings.
From a summary level though, let’s have a look at some of the comments made by respondents.
When looking at Hypos, the biggest concern was by far hypos during the night. This is what most of the people who expressed concerns about lows talked about as being their biggest worry. The second was about the feelings brought on by them, and possibly the worst case of it:

Hypos are the most horrible thing I have ever experienced. The best analogy I can come up with is that it is like there is an invisible Dementor (Harry Potter) or Black Rider (Lord of the Rings) in the room. I feel intense dread. It feels like there is something very sinister wrong with the world. Like I have been injected with a weird poison.
5 years of type 1! I would love to have lost some awareness, but it hasn’t happened.
I avoid hypos like the plague. I have about one every month or two, and that’s enough. I am very reluctant to allow my sugar below 6.0 for this reason.” 

The other concern was that hypos trigger roller coasters, which one person found to be particularly unpleasant.

With regard to high glucose levels, the overwhelming reason for disliking them was a judgemental feeling that they demonstrated failure in managing glucose levels and the knowledge that highs were slowly killing you. That it had been drummed in from an early age that high numbers were bad and that you shouldn’t be getting them. It feeds back into the feelings of being a bad diabetic.

Health care professionals take note about how high blood glucose levels are presented and addressed with the person suffering from them.

The final question related to whether lower or higher numbers were more bothersome and caused more concern. The predominant feedback was that neither was preferable and being in range was always the most preferred option. With that not being an option, many opted for preferring to be lower as it was generally easier to fix, and didn’t last as long.

A couple of comments related to length of term of high or low and there was a preference in the comments for a higher level if it was for any extended duration, The choices made during this poll also seemed to relate to what was considered immediately dangerous.

So, what can we ultimately take away from this light weight and unscientifically survey? That the people who responded to it have a wide variety of views and that the DOC is more bothered about highs than lows. It’s something that should be fed into the ongoing work being done about really bothers people with diabetes.

I think the thing that stands out for me the most strongly are the statements relating to high blood glucose levels and the reason they are considered so bad. If I was to sum that up in a few words they’d be “Because I feel judged by HCPs for failing to control my diabetes”.

If there is only one thing that I’ve taken from this it is how important the impression people are left with at diagnosis is! These statements relating to why highs are bad probably have a strong link to the reasons that people make up their diaries, aside from not testing. None of us want to be judged. We’re very good at doing that to ourselves, so thinking our HCPs will do it as well just isn’t something we want to face.

I think for me, the unexpected outcome of this is the surprise that far more of us with diabetes don’t have mental health issues!

Be the first to comment

Leave a Reply

Your email address will not be published.