Ninjabetic – The life-changing #doc
This week I had the pleasure of taking part in PhD research.
It was about living with a chronic condition and using online communities to assist with the management of my type 1 diabetes, both the physical and emotional management.
I have taken part in similar discussions before for PhD research, healthcare professional presentations and patient talks and it always reminds me of just how lucky I was to discover the diabetes online community (#doc) at the time I did.
Four years ago, before joining the #doc, I had been labelled as the “non-compliant diabetic” by healthcare professionals. The difficult patient who didn’t attend appointments or take her medication as she should.
The “frequent flyer” who was well known in the emergency department, attending in DKA on a regular basis. I was the interesting surprise in the eye department, surrounded by people more than twice my age with diabetes related complications and I was often told that I was too young to be there, by both patients and professionals.
Struggles and demands
Four years ago I had got by since my diagnosis in 2002 with barely saying one word to anyone else with diabetes, and often thinking and feeling that I was the only young person in the whole of Portsmouth and the surrounding areas with type 1.
At the time it didn’t make sense to meet new people and talk to them about this condition as I wanted nothing more than to push it to one side and forget the struggles and demands that came with it.
How wrong I was in not taking the time to get to know my peers and my condition better. However, I don’t realise there was any other way to learn than sitting in clinic appointments, being ticked off a list and directed from room to room after I walked in.
During the PhD discussion, I was asked to fill in a circle with the names and roles of important people in my life when it came to my diabetes.
My name had already been placed in the centre with three circles surrounding me depending on their importance in my diabetic life.
I knew straight away what I would write in the inner most circle, the #doc.
The #doc, along with my family, is there for me at every waking moment. The support I receive is priceless and no amount of professional emotional support could come close to what the #doc is able to offer to me.
The #doc can relate, it can teach, it can empower and it gets results that no healthcare professional has been able to achieve with me.
This is a powerful statement to make, but it’s true. I feel wary of what I am about to say as I realise that peers should not replace healthcare professionals, however in recent months the #doc has done just this for me because the option to use both has not been available.
Some of you may know that I am currently without a specialist healthcare team and have been alone with my diabetes management for quite some time, however I’m not alone when I have thousands of people to call upon for help.
The #doc has a way of teaching that makes sense to me and it is always there. It encourages me to find other answers that I need without giving direct advice; we know that direct medical advice would be unsafe, however the answers are always there ready for me to uncover with a little work on my behalf and some peer-to-peer encouragement and direction.
Thinking back, I was not “non-compliant”, I simply hadn’t found a way to manage my diabetes that worked for me.
Why should teaching be restricted to clinic consultation rooms? Why can’t we learn outside of the classroom? Why should patients only access education from professionals when there are expect patients to assist in developing their peer’s skills?
This is what the #doc has provided for me; a place for me to grow and learn about how to self-manage in a way that suits me.
Upon filling in my circle of support I suddenly realised that four years ago I had three empty circles.
Had I been asked during that time to complete the same task my family, my friends and my professionals wouldn’t have featured at all, I would simply be alone in the centre with, for differing reasons, no one around me.
What changed? When did my family, friends and professionals make an appearance in my life with diabetes?
It was when I joined the #doc. It was only then that I formed relationships with others and allowed them to become a part of my diabetic life, and it was only through meeting the #doc that I realised that I had a life with type 1 diabetes.