Tuesday last week, I woke up to find this message in my Twitter DMs. I read it and read it again. It accompanied a tweet or two to me about my blog post from the previous day.
I debated about whether or not I should share this publicly. I wrote some words, walked away, came back to them, walked away, asked a few friends their thoughts, walked away, wrote a bit more and walked away again. I posted it to my closed Facebook page to get some feedback from others and wondered if that was enough.
But then remembered this blog post. #StandUP.
So, here I am, standing up. Because I am upset and angry.
I am not upset and angry that someone didn’t like or disagreed with what I wrote. It would be frightfully boring if we always all agreed with each other and loved the same things.
I am not upset and angry that this message was unsolicited. I believe that people don’t need an invitation to comment when I write and publish things on a public forum. I invite all feedback – good and not so good.
I’m not even upset or angry that I don’t understand what was being referred to in the message. I re-read and re-read and re-read my post, and I can’t see where I ever, ever said that people with diabetes shouldn’t self-manage, or know what meds they’re taking or what their glucose readings are. I couldn’t find it in there. But, people interpret things differently and perhaps my writing wasn’t as clear to them as I thought it was.
I’m not here today to defend the content in that blog post, because that’s not what this is about.
I am upset and angry that I was being told to ‘be mindful of what and how I verbalise’. This is called tone policing. It is telling me that I should moderate the way that I talk and think about my own diabetes. This was an opinion piece. My opinion. People don’t need to agree with it – and they can tell me they don’t. But telling me to moderate the way that I communicate is a very different thing.
I will forever call out and stand up to anyone who tells me, or others with diabetes, to restrain our feelings or opinions, and that is why I am writing this post. Because more than anything, I believe that we have a right to express how we feel about diabetes, in the way we want to, especially when we are sharing our own opinions or experiences. When we are told to be mindful of what and how we are writing/speaking it is a step on the way to censoring and silencing us. We already do that enough.
Often, in clinical settings, we moderate the way we speak. We might minimise how tough things are, or don’t speak out about the way we are treated or the judgement we face. When we are told that we’re not doing enough and are failing, we look down, afraid to stand up for ourselves.
And so, we created spaces where we could be free to share and rant and cry in a way that gave us some comfort. We turned to others who are likely to have had similar – if not identical – experiences. We share our opinions, some of them unpopular, thought-provoking and challenging of the status quo because we feel we have the liberty to do just that.
We have had to be quiet for too long. But that should never be the case in our own space.
The diabetes online community is that space. Twitter, when we use our #xxDOC (or #DSMA) hashtags is that space. Other online and offline support opportunities and groups we have created is that space.
And this blog (and others written by PWD) is that space.
So, back to the message I received last week. I did ask for clarification, and for examples of where I’d used capital letters or words that could be considered harmful, but I didn’t get a response.
Just this message:
No answers, just a threat to mute me. To silence my voice. Sure, it is only being silenced on this one person’s twitter stream, but that was the response to me refusing to be ‘compliant’ and agree with a healthcare professional’s demands that I tone down the way I write about my own opinion. I had not been aggressive, abusive or rude. I had just shared my own opinion and thoughts in my own voice. In my own space.
6 comments
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February 10, 2020 at 2:16 pm
Bron
As a HCP (& person), I am so sorry you have to put up with this @#$%!!
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February 10, 2020 at 6:07 pm
Colleen Goos
I wonder how that person would respond to someone expressing their feelings about having a life threatening illness, and all types of diabetes are life threatening. Why is it that because as patients we have one of the few illnesses where dosing an *unstable medication to to treat constantly shifting glucose levels multiple times each day is up to our calculations, not theirs. Yet we are looked down on by many in the medical field for not getting it right.
Doctors have the ability to shrug it off and take almost no blame if something goes wrong. They can go home and not even consider how they impacted how we see our diabetes and self. They may not see it that what but it is how many of us do.
On the other hand patients are defined as “noncompliant” etc when our readings come back out of range. While yes there are cases where this is partially true, perhaps doctors should ask what they are doing to impact our compliance or lack thereof. Also why on Earth should we not demand better treatment than we get? Why should we stay silent when we aren’t being treated with as much respect and empathy that other patients without diabetes might receive?
Oh, right because diabetes is funny to so many and even though it’s been shown that diet doesn’t directly *cause* any type we are blamed for it.
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February 11, 2020 at 4:51 am
Colleen Goos
Error: I meant having a different life threatening illness from diabetes.
“I wonder how that person would respond to someone expressing their feelings about having a life threatening illness, and all types of diabetes are life threatening.”
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February 10, 2020 at 8:58 pm
Bronwyn
Your/my opinion is always valid for ourselves, no one should question your own opinion. Even the advice offered by a HCP is their opinion, theirs theory /possibly researched based, when yours is reality/living with T1D based….we share that with you and appreciate your useful and relevant opinion.
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February 11, 2020 at 1:09 am
Cathrine
Petty little creep.
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February 11, 2020 at 2:13 pm
Rick Phillips
I believe that blogs are for the writer first, and foremost. If the reader is concerned about what is written they need to stop reading. If they dislike the advice, tell their patients to stop reading. if they are truly upset, let them start a blog and write why others should not read it.
But of course they will not do that. Why? Because no one writes a blog about not reading another blog, they will not tell patients to stop reading and they will not stop reading because they can not stand not knowing what you will write next.
So what do you do? Tell them to piss off.
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