The diabetic experience: the fly in the Quantified Selfing ointment

[grow_thumb image=”” thumb_width=”150″ /]Quantified Selfers (QSers) maintain that their obsessive practice not only is the be-all and end-all of leading a Healthy Life, but if only more of the hoi polloi would do it, we’d avoid doctors and healthcare costs, the seas would part and we’d bounce to the Gates of the New Jerusalem with a gleam in our eye, driving our Fords with Allergy Alert SYNC. Well, this Eye has gazed Gimlety on this entire Movement for quite a while, to the raised noses of the Healthcare Digerati, and now has found a fellow nay-sayer and nose lower-er in the unexpected pages of The Atlantic. The Eye now slaps the Head for not thinking of the following.

Who were the early adopters of QS? Diabetics. From the late 1970s on, patients were handed glucose meters in the doctor’s office, stacks of reading material and told to go forth and self-manage. Are they happy? Empowered? In control? Au contraire, mon frere!

The fact that diabetics have been doing this for years, and that they largely loathe the experience (author’s emphasis), not only serves as a caution to the vogue of self-tracking. It also offers an opportunity, serving as an object lesson in what works, and what doesn’t work, when people track their health.

Loathing Can Be Quantified as in the 2012 BMC Health-published survey where diabetics told researchers that self-monitoring was the enemy, a Sisypheian task, a perpetual Battle of Stalingrad. No wonder why they are DEPRESSED. The sheer tedium of every day, several times a day, pricking fingers with crude monitors, making the decision on to eat, what, to inject or take pills, meds that get you sick, and never, ever being ‘in balance’, feeling wrong, guilty and scared, would depress The Eye more than sitting through a Jim Carrey movie. Fine to take away a few steps with LifeScan’s VerioSync and iBGStar to send the metering to the smartphone, or to Telcare’s system, and know that hovering in the future may be the non-invasive glucose meter and fully automated insulin pumps that work with your smartphone, but… Thomas Goetz’s point: don’t expect QSing to be a panacea as hyped, do expect that emotional baggage is in the trunk of the car, and that tracking for people is WORK that is really to be avoided. And as Editor Donna continually reminds The Eye, only undertaken when it is a solution to an unavoidable job to be done. And if they don’t see the job… The Diabetic’s Paradox

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  1. Kevin Doughty

    I think that Donna is absolutely right to question the willingness of people who have chronic conditions to change lifestyle in response to the disease and then their behaviour in response to a parameter that they have to monitored every day (and sometimes several times a day). Some people cope well, and for a long time; others can’t manage at all so give up after a short while. It’s not so very different to taking medication – except that taking blood and making personal decisions about what can be eaten is far more difficult. So why do we believe that people are prepared or able to take charge of their own condition? The answer is, of course, that most of us want to be in control of our own destiny; we want the power to decide what we should or shouldn’t do – so monitoring is the price that we should have to pay.

    The reality is that people who are not mentally tough fall down when things get hard. They fail to make the difficult choice and their health suffers. Ultimately, they pay a high price because their condition deteriorates and they become ill. The consequences include stroke, kidney damage and amputation in the case of diabetes. Fortunately, we can identify those people who lack the resilience to manage their own conditions if we start using the techniques used in management and sport to measure mental toughness, such as MTQ48. This can lead to individual coaching goals that make use of cognitive behavioural therapies to support self-care.

    As Donna makes clear, people wont do something that they dislike unless they fully understand the need, and have the motivation to follow it through. Long term monitoring will only work for some people, so don’t think that everyone will want to use those tools.

    • Donna Cusano

      Excellent points, Kevin. Some people are naturally very tough and motivated 24/7. Some people, like Cathy’s mom below, really get sharpened up under pressure and change (including being treated poorly.). Now if sports teams were 100% composed of athletes who were that way, you wouldn’t need coaches. But you do. And even that impetus can fade over time when you see seemingly no ill effects. (Gout–the focus of a public service campaign right now in the US–is one of those diseases that does its merry wrecking quite silently between acute flareups.) There are other crises, other conditions, and you get off track. Or you just tire of everyday managing, expensive test strips, feel the monitoring isn’t working etc.

      Most people need coaching, support and the expectations of others to get to the gym and keep themselves straight on their regimen. That is another fly in the QS ointment and it’s not addressed well at all (gamification just does not cut it.) There’s an extensive article today in the WSJ which I’m reviewing and will post on corporate wellness incentives; by studying these results we might get a clue on what works for most people managing chronic conditions.

  2. cathy

    Give them enough reason and it is suddenly appealing! My mother has had a very stressful six months including a house move, eye surgery, eye drops that impacted her BP (which where a short term necessity), a litter of pups AND a new GP surgery. She is called for her Diabetic check and discusses with the nurse the impact of her lifestyle over these 6 months. The nurse takes her BP – only the second reading that practice has taken and draws blood for the cholesterol analysis. Tells my mother that podiatry in this area won’t cut her toenails, they have different ‘acceptable levels’ for BP and cholesterol than National stated levels and the doctor will decide if she needs new meds.

    Six weeks later with no results being offered and no consultation the pharmacy deliver her repeat prescriptions including two new drugs she knows nothing about. Those drugs are returned wit the driver to the pharmacy. Two days later a letter from the practice nurse to advise that the doctor has decided Mother needs new meds. After a letter of complaint to the practice Mother was granted a consultation with the prescribing GP. In the intervening time she had bought a replacement Glucometer and a cuff to go with my Dad’s BP monitor. The GP told her those readings (all within safe levels for a type II diabetic) were not acceptable to the practice since her equipment might be faulty.

    Mother left the consultation having made it clear that (a) she did not appreciate being told what to do rather than being consulted in decisions about her life; (b) she would not take the newly prescribed drugs and she gave a full catalogue of reasons why (Including that some of the side effects would be irritants to her other health condiitons); and (c) with renewed determination to monitor and eat better now the stress in her life has reduced again. She will also be interviewing other local GP practices since all this GP could say was “so you will not do what I tell you”

    I agree Kevin it won’t work for everyone but if the NHS treats enough people like this there will be an upswell of people who think that quality of life is more important than quantity and so they are willing, and want to be able to choose to, monitor their health – these are the people who don’t just want to know themselves in terms of data but want to make a practical application of that data.