I wrote a post a while ago called ‘You Do You’, (and revisited and expanded on it here). It’s where I wrote about how everyone should have the freedom to do diabetes whichever way they see fit. I’m pro-choice in all aspects of life*, especially when it comes to PWD choosing their own management tools.
And I think that people with diabetes should have the choice to BE the people we need to be. And the people we are. I touched on this on my post on Monday when I spoke about how I felt intimidated online because my opinions and thoughts, and the way I addressed issues, were not everyone’s cup of tea. I felt that I was being called out for being myself. And that wasn’t okay.
No two people with diabetes are the same; no two people with diabetes will have precisely the same management ideas and preferences, and no two people with diabetes will react and respond to situations in exactly the same way.
THAT IS OKAY.
Diabetes is messy, frustrating, weird, annoying, amusing (rarely, but sometimes), scary, boring and a whole lot of other adjectives. And how we react and respond to it is our own business and no one else’s. You BE you, because you have the right to do that.
You have the right to be as loud or as quiet as you want.
You have the right to be as bitter and angry as you need to be in the moment.
You have the right to celebrate and be joyful about your diabetes.
You have the right to call out things that upset you just as much as you have the right to commend the things that make you satisfied.
You have the right to step away from groups, situations, people who upset you.
You have the right to disagree with others. Having an opposing view does not mean that you are attacking another person.
You have the right to have an opinion on what you see in the world of diabetes – even if it is happening on the other side of the world. I was incredulous when it was suggested that I shouldn’t question something happening in a healthcare system of which we are not a part. (I may not use the healthcare system in the US or the UK or Italy or anywhere other than Australia, but I am allowed to comment on what I see being done in those places.)
You have the right to be passionate and not be told that is a character flaw.
You have the right to be emotional because diabetes is real in a way that only makes sense to those of us who are living with it or have a loved one living with it. I don’t know how to take the emotion out of this, so you bet I will be emotional at times. I don’t get to clock off at the end of the work day and not think about it.
You have the right to use the words and language that works for you when talking about your own diabetes and if anyone tells you that #LanguageMatters is actually preventing PWD from doing that, tell them to fuck right off. It’s not. It never was. It never will be, and anyone who says it is has missed the point of the whole movement.
You have the right to use the word ‘fuck’ or whatever else you want to use. Profanity helps some people and we shouldn’t be told to wash out our mouths if others don’t like us using those words. (Sorry, dad.)
You have the right to be the sort of advocate you want to be. Or to not be an advocate.
You have the right to share your experiences – even the ones that don’t shine a particularly positive light on health systems or HCPs. No one – NO ONE – should silence us when we turn to our peers to seek support, or talk about what is going on in our diabetes lives.
You have the freedom to talk about your own diabetes, especially in the diabetes online community which we created for this very reason – to be able to share our experiences, learn from each other, support our peers and build each other up.
So, this? This is me being me. This is me standing up and not going quietly. This is me saying that I will be the person with diabetes I need to be, because it’s the only way I can be true to myself and true to my community.
*Except vaccinations. I don’t believe in choice there.
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January 25, 2020 at 1:56 pm
Rick Phillips
I understand my views on insulin pricing (rather how to attack insulin pricing) runs counter to most of my diabetes friends in the US. I have suffered a little for those views and will suffer more sooner than later.
But I have never wavered in my opinion about how to combat it and it is fine that I am in the minority. I just hate to be barked out of the community because of those views or my views on looping, or Medtronic pumps etc. etc. I get I am an outlier. I am good with that. However, I still get to be part of the community and if my views do not carry the day, so be it. Likewise if they do so be it. I will not insist anyone leave if I am right and if they are wrong, those who disagree can stay as well.
rick
PS: Not the case with vaccinators however. There is only correct view on that subject.
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January 27, 2020 at 5:47 am
Colleen Goos
I was in a community where the leader posts both “good” aspects of having diabetes and the more emotional rawness of it. It amazed me at how many people complained that they did not want to read the more emotionally charged posts because they wanted to believe that having diabetes is “better” than something else. I finally started saying that the point of the community is not to silence one voice over another and the posts made are the reality of the disease and we all have the right to state how we feel. If you feel wonderful great if not well that is allowed too.
Some days I can be grateful that I can treat my diabetes but on other days I am angry that so many in the world do not have access to treatments that work for them. Other days I am angry that I have no memory of what normal blood sugar levels feel like and I’m tired of treating diabetes 24/7.
Diabetes is not a rosey group of diseases. All points are valid when it comes to our emotions.
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