Type 1 diabetes, puberty and privacy

Clinic days for us are fabulous affairs.  Very early on, long before Pumplette was consciously aware of what was happening, I resolved to make every routine clinical appointment an event.  Day off school.  Lunch out.  Some shopping.  Proper Mummy and daughter time.  The clinic we attend is run in an afternoon, so it is no mistake that I attempt to make the morning a relaxed, chilled experience.  I encourage Pumplette to think about any questions she may have in the run up to a clinic day and we chat about the different news she wants to impart to her consultant.  This has helped her to take an engaged approach to these meetings and will hopefully mean she will learn how to have constructive dialogue with her hcps in the years ahead.

Growing up fast....

Growing up fast….

But for all the preparation I can put in before a consultation, there is one rogue element over which I have no control.  Namely her consultant! We have received fabulous care from this consultant now for almost 10 years.  She has watched Pumplette grow from a very poorly scrap of a baby, into the confident, sassy young lady that sits before her today.  Pumplette adores her and can chat freely with her about life, state of the nation, and school!  However, she wouldn’t necessarily be the first person Pumplette would turn to about matters of growing up.  And so it was with this back drop that during our last consult, I was asked, in front of a wide eyed Pumplette, whether there were any signs of puberty yet.

The fear and horror Pumplette felt was palpable.  I wanted to reassure her not to worry whilst also wanting to lamp the consultant for asking something so personal in quite such a direct manner.  For once again, I found another thing that T1 was trying to steal from my child.  Namely privacy. Because, with T1, there is no privacy.  Unexplained high blood sugars give an early warning alert to any infection that her body may be preparing to fight, long before the first snuffle is wiped!  Or they may herald a growth surge in your child’s development weeks before you buy the new shoes!  Or high blood glucose levels may indicate the onset of puberty, with insulin requirements soaring.  As people without T1, we can only begin to imagine how irritating, humiliating and down right embarrassing it must be for our children to have their entire physiological development laid bare in bg levels, to be picked over and assessed by well meaning health care professionals (hcps).  Don’t get me wrong – there is clearly a need to inform us that soaring bg levels and massively increased dosage of insulin are a normal requirement of the onset of puberty.  It was just the way in which the question was posed that had me ruminating on the approach to this subject.

Of course, there will be some for whom this approach would be entirely appropriate and they will wonder why it is that I’ve chosen to rant on this.  But for my daughter, at that time and place, she had not prepared herself for the possibility of discussing her physical development from childhood into a young woman with a consultant who hitherto had only, as far as she was concerned, proffered advise on the management of T1.  I am convinced that there is a better, more gentle way to approach this subject which would have afforded Pumplette the opportunity to take ownership of the information rather than leave her with a feeling of deep embarrassment, bordering on humiliation.  Maybe I should take some responsible for not pre-empting such a discussion with her consultant, but in all honesty, it blind sided me too!

After the consultation, understandably, Pumplette had many additional questions and fears that she needed to be addressed.  Rather than rushing back to collect her sisters, I made some time for us to grab a cup of tea together and chat through the issues raised that might be troubling her.  After talking things through she seemed a lot more comfortable with the discussions that had occurred that day and reverted back to happy-go-lucky care-free mode.

However, if its all the same to you, dear reader, you will not find me discussing her physical development here.  Unless expressly authorised by the once curly headed youngster whom it concerns.

Because her privacy is her right.

And I’m not about to let T1D rob her of anything other than functional islets!!

4 thoughts on “Type 1 diabetes, puberty and privacy

  1. Absolutely right, Annabel! I’ve mentioned before to PDSNs that it would be good to have some time to talk to the consultant without the child there, for things that are potentially sensitive or embarrassing. I understand and appreciate that they want to engage directly with the child, but sometimes it’s really better just to have a quiet word with mum or dad out of their hearing.

  2. As somebody who got t1 diabetes at 1 year of age I couldn’t agree more with your “rant”. Very well said in my day it was worse, all the consults were men, humiliating and such a power imbalance. Some are not so lucky with parental support either, can make pts vulnerable to so much…

    • I have always been very grateful that her consultant is a woman as I feel its important for her to have numerous strong female role models. Completely hear what you’re saying about the male consultants – its hard to imagine a more intimidating environment than that. Hope all was well in the end & that someone had your back and helped you find your voice….

  3. Yes, I agree that was a totally inappropriate way of approaching the subject. I know it’s simpler for boys, but our consultant has just mentioned in passing that hormones & growth spurts are a factor to be aware of. He also joked that he’d know when he got to puberty because he’d start growing a beard like his big brother! Not quite accurate, but it got a laugh 🙂

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