Something flashed across one of my social media feeds the other day, and, had I been in a Looney Tunes cartoon, smoke would have come from my fingers as I screeched to a holt, scrolling back until I found it.
It said this:
Now, I generally hate stupid memes and inspirational quotes. In fact, if it’s not coming from Effin’ Birds, I rarely even pause to read the words.
But this one has had me thinking for a few days, because just a couple of weeks ago, someone on Twitter commented that my tweets were filled with angry emotion and that I should try to fix that. Now, three things: 1. This guy was an anti-vaxxer so he can go get fucked; 2. I wasangry because as well as saying that vaccines are unsafe (lie number 1), he was also claiming that type 1 diabetes doesn’t exist (lie number 2); and 3. I do not take well to being tone policed.
I do come across at times as being angry. But actually, a lot of times there is something more behind my anger. A lot more behind it.
When people see anger, it is the manifestation of 21 years of living with diabetes and 18 years of working in diabetes, and the experiences that have cut to the bone. For me personally, there have been such hurtful and damaging times where the result was for me to head so far underground with my diabetes that I thought I would never recover enough to dare to seek help again. I have heard those experiences mirrored in others’ stories, which we share to gather support and strength from each other. Sometimes, when we speak of our stories, the emotion that comes out appears to be anger. But often, it is actually grief.
When I see HCPs behaving badly online, I think about the times that this happened directly to me and how I felt in the moment, and in the hours and days afterwards. I think about how long it took for me to accept diabetes because it was introduced to me under veils of threats of the horrors I had ahead of me if I dared stray from the demands being placed on me.
All tied up amongst the angry confidence you see is a mess of other emotions, and when I stop and look, which I don’t really like to do, it is undeniable that grief is ever present. I grieve the life I had before diabetes, because even though it was over 21 years ago, I can still remember it. I remember the freedom and spontaneity that came with simply not having to think about glucose levels, carb counts and all the other things that diabetes requires. I grieve the times I didn’t need to think about my mortality. At almost 46, it’s one thing to think about getting older and dying. At twenty-four it was a mind-fuck I didn’t know how to manage.
I grieve the impact diabetes has had on my fertility, which is intrinsically connected to the grief of miscarriages. The anger that I feel about those experiences is especially strong here, but so is the grief, and to be honest, I’m not sure where one stops and the other one starts.
I feel grief for how diabetes has clouded the way my kid has grown up. A mum with diabetes may be the only mum she knows, but she has been forced to understand that sometimes she comes second to diabetes. That grief is tied up with sadness, as well as anger for robbing her of not needing to know what it’s like living alongside diabetes.
Grief is heavy. It weighs me down and has the ability to engulf me in darkness. I feel guilty when it overtakes me, because, didn’t you know, we’re meant to be superheroes. Positive, enthusiastic, shiny superheroes. People with diabetes are football legends, movie stars, marathon runners and we’re not meant to allow it to limit or overwhelm us. I feel guilty for feeling this way when my diabetes life is comparatively easy – access (to care, technology medications), affordability, health literacy are all challenges I don’t have. And yet, I still grieve that it is part of my life.
If I, or other people with diabetes, appear angry, we probably have reason to. But please consider what is behind that anger. I have learnt to sit with my anger comfortably and painfully in equal measure. And I have also come to understand it is rarely there alone.
5 comments
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November 13, 2019 at 4:54 pm
Colleen Goos
This is one of the things I grieve about and am angry about. My now 26 year old daughter has never experienced a life without my diabetes in her face. Even now that she is on her own it affects her. It is something that cannot be hidden and it is something that presents scary devices and the possibility of incidents that are traumatizing. We have support systems for parents with kids with diabetes, but nothing for kids of parents with diabetes. My daughter tried groups that were centered on chronic illnesses in general but even still the destruction is different because of the intensity of patient responsibility in dosing, etc.
“I feel grief for how diabetes has clouded the way my kid has grown up. A mum with diabetes may be the only mum she knows, but she has been forced to understand that sometimes she comes second to diabetes. That grief is tied up with sadness, as well as anger for robbing her of not needing to know what it’s like living alongside diabetes”
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November 14, 2019 at 2:22 am
Cathrine
All I can say is: AMEN.
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November 14, 2019 at 2:13 pm
Rick Phillips
My mom used to say she only got angry when she looked at me giving myself an injection. I also used to get angry when I knew my sons had to grow up too early because some days they had to take care of their dad.
My youngest said that he loved the sense of responsibility and adventure. Funny thing, it is what I woudl have said as a child when I had to take care of my mom.
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November 18, 2019 at 1:50 pm
Con
The Diabetogenic is literally the BEST diabetes community anywhere, i read it everyday, and i’m also grateful i found http://bit.ly/diabetesgoneforever , it helped me not only manage my type 2 diabetes but reverse it, hope it helps some others!
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November 23, 2019 at 10:42 pm
Jorja Leigh Buckingham
For me personally, there have been such hurtful and damaging times where the result was for me to head so far underground with my diabetes that I thought I would never recover enough to dare to seek help again. I
AMEN
you’re amazing, I really hope to meet you one day
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