(metaphorical photo 1 - Munich Olympic Park - an Olympics has many different events and a lot have very different skills needed)
So last time I tapped away words on this blog I mentioned I'd be back with another post about stigma. I know it's been a while but it's been rattling around my head ever since and I thought it was about time I got some perspectives down.
Since I joined the world of the Diabetes Online Community back in 2010 my perspectives and thinking has evolved over time. I know it's not fashionable nowadays to be allowed to change opinion but my curtain parting from the 1990s suggests I'm not always at the front of high fashion.
For a big chunk of time since 2010 there was / is a noticeable feeling from the Type 1 diabetes community that those people with Type 2 diabetes should be viewed with a little bit of a sideways glance and not be invited into the 'proper' diabetes party. While I've always tried to push back a little bit on that I know that somewhere in my twitter history will be a comment about how outraged I am that a comedian made a joke about diabetes and how they were upsetting me as a T1 when it would be OK to poke fun at the T2s. *For 100% clarity this is view NOT appropriate and thanks to conversations and developed understanding my views have changed. Whether it's worth getting upset over a random comedian making a lazy joke is a completely different discussion.
The trip to Barcelona was fantastic as, for the 1st time that I could remember, Abbott had invited some people with Type 2 diabetes to be an integral part of the weekend and to talk about the work they are doing to improve the lives of those with T2 across Europe. With this came an admittance from some in the room that, as a community, we've not always been welcoming but how this was now changing. Looking around the room I could see a lot of nodding, smiling faces and this was a good thing. It was less about them and us and more about how we could share common experience to improve the lives for everyone about diabetes of all sorts.
Amazing, stigma, and pre-conceived ideas, were becoming overcome and we were such a positive welcoming family that no-one would feel excluded.
Well, almost but not quite.....
You know that bit about where I'm always rambling on about how I wear two hats now? One hat, let's say peaking running cap, as a person with diabetes and one, a nice warm wooly hat, as a parent of someone with diabetes? Well during the weekend a couple of times comments were made about 'parents' and how they just don't understand what it's like to have type 1 even though the 'parents' say it's tough. And these things were said pretty openly with knowing smiles from everyone and acceptance that what was being said was correct. There was a definite feeling that in the league table of pain involved in living with diabetes, the parents were in the bottom half of the table trying to avoid relegation into Division 2 where all, well maybe not all, the healthcare professionals lived.
Each time I heard a comment like this I thought back to the words of Wendy Smith from morning 1 who talked about stigma, bias, and not fully understanding a viewpoint until you've stood in those shoes. What made me most surprised was that a lot of the time the people saying these things were the ones who had said we needed to work to reduce stigma within our diabetes world. There, appeared to be, a distinct lack of understanding about the challenges having diabetes in the family brings.
Being a parent of a child (or grown-up offspring) with diabetes brings its own emotional and physical stress. I agree it's not the same as having to manage the diabetes monster yourself but that doesn't make it easy.
Remember all those warnings about feet dropping off and blindness that impacted you as you grew up, or are still impacting now? Well they heard the same things. In fact they probably heard them first and, nowadays, dived straight onto the internet to try and find out what the long-term impact of your condition would be. As we know the internet is rarely a reassuring place when looking for calm reassurance. The difference here is that although the 'parents' will help the person with the dodgy pancreas, ultimately, past a certain age anyway, they don't have direct control over what is injected, eaten or exercised. And that's chuffing hard. Every CGM alarm sets the mind whirring about immediate or long-term danger. And every period without alarms means that they just worry things are going wrong without the tech working.
This isn't a competition about who has it harder, it's an acknowledgement that it's tough for everyone. The challenges are completely different but the cause of the stress is the same and the enemy is common.
I'm writing this on the train going to work and as I look down the carriage I have no idea what challenges my fellow travellers are going through either physically or mentally; although a lot of us do look like we could do with a double espresso to get us ready for the day ahead.
Once again I'll got back to a key subject of the Barcelona weekend. Stigma. We all need to accept we have them and look within to see if there's anything we can do to reduce the impact of that and make us understand the shoes that other people are wearing. And that includes me.
Above all, be considerate, be nice, and ask questions. In our part of the online world people generally like to share how they feel and what they experience. We can all learn by trying to find out more and breaking down those bridges.
PS. For those of you who don't know, last year after watching the London Marathon on the telly I thought it would be a great idea to enter the ballot and try and get a place for this year's event on 2nd October. And unfortunately for me I was successful! My training has mostly gone OK which you can see a summary of if you feel like donating on my JDRF sponsorship page - every Pound / Dollar / Euro / Shekel is gratefully received.
Parents of kids with T1 are the salt of the earth. Long suffering, they are the rock stars.
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