Health is a very personal thing. It's also a very unique thing, as seen with the current Covid-19 crisis. The differences in symptoms and illness severity are vast. The same appears to be true for Type 1 Diabetes. (I imagine it's the same for most other health conditions too!)
I'm very open about my T1D. I've been chuntering on about it online for a few years now. I've spoken about my eye complications, which relate to it as well. I do that because the engagement I get from my peers is informative, it's supportive, it gives me a greater understanding of others and their diabetes. Over time, it's brought about many positives including meeting and becoming friends with some truly amazing people.
But (and there has to be a but or there wouldn't be much more to add) despite all the engagements, the almost daily conversations about T1D, the articles I read, the videos I watch, the conferences I attend and the many different social media platforms I use, I know VERY LITTLE about how others manage their diabetes, the nuances, the different points of view, the wants, the needs... Your diabetes does vary! I know little bits about lots of people. Not enough to advocate anything for them in relation to their diabetes apart from staying alive and well.
So, how can anybody talk for others in regards to their health? I've had long-standing relationships with various HCPs and I wouldn't want any of them to talk with accuracy and conviction about any aspect of my health apart from the basics, especially my diabetes! I don't know about you, Reader but my T1D is constantly changing. It's why it's such an exhausting condition and possibly why so many feel they have to micro-manage it. How can any one person talk with conviction about the diabetes of others? It's rarely the same even daily.
This is where my problem lies with "diabetes advocates". Not all diabetes advocates. To some extent we're all advocates because we all want the best outcomes and care, I think! If you don't then there are probably bigger issues to address. I'm specifically referring to anybody who speaks on behalf of a community or group of people, about very specific aspects of their diabetes without speaking TO them first. Or perhaps speaking to a few select people and assuming their opinion represents the general consensus.
Don't speak for me until you've spoken to me
Twitter appears to be great at getting things wrong when it comes to assuming opinion. Do you remember all those polls from elections and referendums gone by? Yet, here we are. Brexit happened, Labour were trounced and Trump is doing whatever Trump does. It would seem foolish to assume a community on social media represent a much larger community of PWDs who don't talk about their health online.
What's the solution? Personally, I try to talk about my health, my concerns, my needs and how everything is affecting me. I think that's largely true of most advocates. They share their stories and how they think things could be better from their point of view. And that's amazing! That's true advocacy because it's personal. It allows for an empathetic response to anybody reading or hearing it.
We want...
You want, some of your friends might want and probably a few others you've never spoken to. Unless you've spoken to everybody or even an adequate sample size of people, can there really be a "we"?
We're all in the same boat!
No, we all sail the same stormy seas in different directions, on different boats. Some are similar. Mine has a lot of barnacles.
We all need pumps...
We should all be on a LCHF diet...
Everybody should be looping...
We all want Diabetic Dad to stop hoarding coffee...
Those things are just unreasonable assumptions based upon comparatively limited experiences. Especially that coffee thing! Send more coffee!
There are, of course, exceptions. We want good health and medications. We want insulin, obviously.
Thanks for reading.
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