In 2012 and 2013 I used to be quite heavily involved in the Diabetes Online Community (DOC) as @adddie114 through the use Twitter and diabetes community tweet chats such as @gbdoc. I was primarily using these to look for peer support and increase my knowledge about managing T1 diabetes.
At this stage, the DOC was still quite embryonic in its structure, and was primarily used for peer support help and advice in the vacuum of Type 1 diabetes knowledge, skills, empowerment, activation, skills and peer support.
Anyway, having used the DOC for about a year and a half I had some major life changing events that greatly reduced by ability to participate and I became very time and health poor. Essentially within the space of a few months we had a new baby, was completing an MSc, started a new job in clinical trials at a Cancer Trials Research Unit and then for the last 24 months I’ve being trying to get to the bottom a second debilitating autoimmune disease / long term condition – Neurosarcoidosis (more of that one is my next blog).
So, with all these things going on my intended short break away from the DOC has now reached the 3-year marker. Although I received great positive benefit from the DOC I decided to abandon Twitter for a short period of time in 2013 whilst I did the new baby thing and got to grips with the new job. However, given my absolutely shite health status of the last 24 months (non -diabetes related) I have not been able to return until this week.
The purpose of this blog is to report back from almost 3 years in the wilderness. Essentially to give my thoughts on how this enforced hiatus affected by attitude towards and management of my T1 diabetes.
The first overarching question that springs to my mind is should, or more importantly, can the use of peer support and in particular the DOC be considered as a “treatment” for helping to enhance and maintain good quality self-management of T1Diabetes?
This is a very difficult question to answer as the definition of treatment is a very varied one and often depends on your starting point. I suggest it may vary considerably whether you are a patient looking for help in self-management. Or a doctor open to new ideas and innovation in the hullabaloo of current postcode code lottery care solutions with their sub optimal outcomes. Or perhaps you are more of the persuasion where the hierarchal medical model is still king.
One definition of treatment is….
An activity directed at or performed ON and BY an individual with the objective of improving health, treating disease, injury or making a diagnosis.
What I intend to illustrate (granted - through my own n=1 sample) is that I now consider the use of DOC to be one part of a multi layered and multi-platform suite of treatments that aid me to self-manage my T1 diabetes to the best of my ability. For the people who are T1D’s who use the DOC, this will not come as a surprise and probably one of the main reasons they continue to use it – however to others it may do.
Now before HCP’s get hot under the collar and there knicks in a knot about another person from the DOC thinking Twitter and peer support is the magic bullet panacea of diabetes care. I just want to put in some caveats to this blog.
DOC is not for everyone – there are plenty of patients who do not want to engage with this type of activity. In fact, for some they may well think it would be the worst thing in the world and could never envisage being part of it or seek it out. The technology and aptitude to participate is not accessible to huge swathes of society whether that barrier is cost, IT literacy, health literacy, desire, or just don’t care about their self-management etc.
My learning from being involved in clinical cancer trials is that the online world is a million miles away from many patients’ thoughts, aspirations, practicalities, needs or desires about the treatment of their disease. And just like in cancer, the DOC is far from representative of the needs and desires of the full T1D cohort. (IMO).
That said, the role of patient experience still has a valid part to play in the development of care pathways and treatment models and should not be overlooked by the clinical fraternity as a very untapped area of knowledge and “expertise” for innovative ways of improving diabetes care.
So, what I offer in this blog is my experience of what happened to me from being heavily involved in the DOC and then being in the wilderness for 3 years. I hope you find it interesting reading and food for thought.
Noticeable changes in my diabetes management since not using peer support / DOC.
Practicalities of T1D Management
- Just going through the motions
- Not recording and testing as much
- Less interested in my trends and patterns and data analysis for decision making.
- Diabetes dropped down my subconscious list of things that were important in my life
- Isolation in dealing with day to day diabetes issue- practical, emotional and physical
- Longer timeframes for pulling yourself out of periods of low motivation and lack of tenacity
- More prone to phases of burnout
- The prior trend of ever improving control peaked plateaued and then reduced.
- Loss of motivation toward diabetes management
- Accepting this was as good as it gets
- Developing a “that will do” attitude
- Loss of desire to challenge myself to improve
- Being motivated by others stories, experiences both good and bad
- Far less activated
- I learned virtually nothing about new technology, gadgets or latest devices
- No access to info and evidence about support structures, research, skills, exercise, peer support
- Missing those who advocate good science and shoot down poor or dodgy media coverage.
- Not knowing about new technology, ways of working, paraphernalia, new science breakthroughs in research
- Feeling very alone with my disease,
- Missing being told that others may also not be having such a perfect D day and welcoming the fact that perhaps you are not so stupid after all, and that you should not be so hard on yourself.
- Missing the diabetes related humour
- Missing being in the virtual company of my tribe - who just get it!
- Not being part of the tribe, friendships, emotional support, help
- Not being amongst my people and the positives this bring, lonely, isolation,
- Not having to internalise everything Diabetes related - no release valve
So why is all this a treatment?
Optimal T1 diabetes management requires the upmost dedication and persistence, tenacity, knowledge, education and support for the patients to accomplish. Christ knows, I’m 12 years in, have an undergraduate degree in Nutrition and still struggle with it some days.
For me the biggest noticeable change since going into the peer support wilderness was my overall levels of diabetes motivation between my 6 monthly diabetes clinic appointments. The lack of drip feed from the DOC that influenced my own diabetes management was non-existent. I was trying to carry all this extra burden back on my own again. I quickly noticed that all the “good things” I did relating to diabetes management begin to wane in between my clinic appointments. To be specific the benefits of peer support from the DOC have / had a direct positive effect on my diabetes be it emotional, physical or psychological.
The positive benefits of being involved in the DOC appear to have a direct correlation and one could argue, a positive causal effect on my control by directly influencing my levels of motivation, activation, tenacity, empowerment, skills, knowledge, problem solving, and psychological well-being.
Subsequently in the world of postcode lottery diabetes care, the need for activated and motivated T1 diabetes patients is paramount. My three years in the wilderness have taught me that peer support, via the DOC or otherwise, can and should (for those who want to engage with it) play a massive part in the suite of “treatments” that aid us to live healthy, long and fulfilling lives.
How that is implemented in the real world, through the evidence based, convoluted adoption and commissioning processes of the NHS is for the folk way above my paygrade to suss out and provide the evidence. However, from my n=1 sample, it would be a “treatment” option very much worth pursuing.