In September I was invited by the Diabetes team at Barts Hospital in London to speak at their Type 1 Diabetes Celebration Day.
I would like to thank the team for inviting me to speak. This is the second time that I have been invited to one of their events and have enjoyed it. I think the team are very engaged and motivated to see their patients do well in managing their type 1 diabetes.
How did I get involved?
I first came into contact with the team at another NHS event where I was speaking about my experience of the transition from pediatric to adult care. In that talk the team must have heard something they liked (not sure what!) because we spoke afterwards and exchanged contact details. And the rest is history.
When the opportunity came up to speak at the event I jumped at the chance to work with the team again.
The big moment
Although I wasn’t at the event for the whole day, the programme covered all areas of type 1 diabetes. There were talks on Technology and type 1 diabetes, driving and employment, a research update and technology update. Most importantly, lunch was provided!
I was very nervous at the start of the talk. I had the slot straight after lunch which can usually be the graveyard slot. I was also wondering if the audience were going to be interested in what I had to say. They were different to what I had anticipated and I wondered if I was preaching to the converted.
Previously when I have spoken publicly, I always try to connect with the audience within the first few sentences. This time was no different. Early on I said that ‘I’m not a perfect type 1 diabetic’, I felt a connection with the audience.
I think that when you have type 1 diabetes and you are hearing some else talk about the condition, you can sometimes look at how ‘real’ the person is.
By ‘real’ I mean do they tell you they aren’t perfect? Do they say that their blood glucose level isn’t always between 4mmols – 7mmols? Do they say that Hba1c is over the recommended 6.5% (that’s 48mmols in new money)?
There is also something quite amazing about speaking to a room full of people with either type 1 diabetes or an understanding of a condition.
We are a group of people who the words high, low, meter and pen all have a different meaning to their conventional use. We have our own terminology and common shared experiences. As a speaker it feels nice when people just ‘get it’.
I spoke openly about my life with type 1 diabetes and the struggles I have faced. From transition to my time in the Diabetes Wilderness to my type 1 diabetes complications.
I feel that subject of type 1 diabetes complications is like an elephant in the room. We all know they exist but can be reluctant to talk about them. It can feel that when you admit you have a complication caused by type 1 diabetes to other people they are judging you. There is also seems to be a stigma attached. The only way to overcome the elephant is to talk about it. I’ll do that in another blog.
I was also part of a Q&A panel later in the afternoon. I was with esteemed company, from a diabetes consultant to a research manager and diabetes specialist nurse.
Being referred to as a ‘type 1 diabetes expert’ was quite unnerving. I’m just a regular guy who lives and struggles with type 1 diabetes. I really enjoyed the experience of being on the panel. I hope I added value and my voice was representative for people with type 1 diabetes.
One question that sticks out in my mind was when I was asked, ‘is anything good about have type 1 diabetes’?. I think I said I can’t think of anything because it is a chronic illness and not many people have said there is. I then I said I’d learnt about my body and was more in tune with it.
Looking back I’d probably answer differently. I do think there is something positive about having the condition. Having type 1 diabetes, has meant I’ve been able to live a life and not stopped myself from doing something if I really want to.
It has meant I’ve developed a mental strength to be able to overcome seemingly insurmountable problems. It’s by no means easy and an on-going challenge but I’ve got there.
I’ve learnt the importance of being prepared for every eventuality. Type 1 diabetes is unpredictable, very unpredictable but over time I’ve learnt to be prepared and react accordingly to this.
So yeah there is something positive about having type 1 diabetes.
Let’s celebrate Type 1 Diabetes
I think these events are invaluable and shows what a great job the NHS does on limited resources. There are a team of people who are dedicated to help me, you or someone you love with their type 1 diabetes. Yes they put on the event for their patients but they should be celebrated as well.
Whether you have type 1 diabetes for one month, one year or ten years these events help you at any stage. Why? Because you have something to learn and something to give back.
One month after diagnosis you might meet a newly diagnosed person and share what you have learned over the past month. One year down the line – you got through the first year, go you! You can share what you have learned over the year. Ten years down the line you can learn about the advancements in type 1 diabetes technology.
The best thing is that you are in a room with other people with type 1 diabetes and can make a new diabuddy and as we know ain’t no buddy like a diabuddy.
What do you celebrate when it comes to type 1 diabetes? Do you think there is anything good about having type 1 diabetes? Let me know in the comments.
As always thanks for reading.