Why, and How, I Have Ditched my Diabetes Team

Kate Gilbert writes for Twice Diabetes

It’s confession time.  I cancelled my last endo appointment and haven’t made another.  I haven’t seen a diabetes educator since I needed a new pump years ago.  I have never seen a dietician regularly and will not be going back to the last one I saw. 

Who else should be on my list? Or “in my team”, as they say?  A mental health person is always recommended.  I was seeing a wonderful psych who really got it but when I returned to work after babies, her out-of-pocket fees jumped to $100/session which I didn’t have.  They talk about “my GP” but my favourite GP is also everyone else’s so I see whoever has a spare slot in her practice, different every time, with astoundingly little access to my history despite all being under the same roof.

It has just dawned on me that I have “dropped out of the system”.  They talk about this stuff at diabetes conferences: these people who skip appointments and won’t engage. I’ve even presented research on it myself and now I’m one of “them”.

Why?  It is not personal. These health professionals I’ve seen have been smart and caring, kind and compassionate.   I have worked tirelessly to seek out some excellent people.   But they give me nothing now.  It’s actually been a very long time since my diabetes team (which, incidentally, is not a team by any dictionary definition of the term) have given me much help with managing my diabetes – even during my very complicated pregnancy, which may be the root of my dissatisfaction, but a story for another time.

It feels naughty but I’m not apologising.  I have many more calls on my time, and my money, than I can manage, and I have to prioritise every day.  For a while, I kept these often expensive and always time-consuming appointments on the list as they felt somehow sacred.  But as the pressures of my life have intensified, I just can’t justify the time and money on an activity which gives nothing in return. 

More than just a waste of time and money, some appointments probably have a negative impact on my health and my diabetes.  A date in the diary for a check-up can be good motivation, something to work towards, a chance to stop and refocus.  But that doesn’t work for me anymore.

On the morning of my last diabetes appointment, as I changed the first nappies of the day, I was running through the complex movements of family members which would allow me to get to that evening’s appointment.  Between peeling bananas, I checked bank balances remembering the embarrassment of getting my card declined last time.

As I poured out the 3rd bowl of cereal, I caught my breath – why am I doing this? I really don’t know.  I must, I must prioritise my diabetes.  The appointment will help. Will it? I really don’t know.  What have I got from the last few? Nothing.  And what have I got from all the guff which surrounds the appointment (and the doctor never sees)?  Stress.  Equals high sugars.  Racing across town equals missed boluses, scrappy carb counts, skipped meals, crappy snacks, feature on any day with added extras like this appointment. So if I kept the appointment, I’d be going backwards today.   So, I rang to cancel.

The one appointment that I will always keep is my eye specialist.  Even though it’s the one I dread, and hate, the most.  Sometimes a 30 second check-up, with the obligatory, fuzzy-eyed 4 hour wait.  Other times, I never know when, “a little laser”, and a stumble home in shock, awe and pain.  But I’d never miss it for the world.  I did once, but they chased me and chased me until I came in!

How did I orchestrate this dropping out of the rest of the system? In this age of “chronic disease plans” and “patient-centred care”, no one has followed me up.  I could pick up the phone, my team are very accessible, but what would I say?  After 30 years of diabetes, and a commitment to learning, I know all the “stuff”.  And the motivation which would really make a difference to my far-from-in-control diabetes must come from within.  Thirty years that took!

So here I sit.  Me, my diabetes and I.  Like it’s always been. 

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