The contradictions in diabetes are complex and confuse my little mind sometimes. Today is one of those days.
Getting the message that diabetes is serious – and needs to be taken seriously – is sometimes messed up in our determination to show that diabetes won’t stop us from being superheroes. In our proverbial capes*, we do amazing things; we are brilliant; we advocate; we inform. All while pretending to be a pancreas.
We use language that empowers us and makes others see us as forces with which to be reckoned. I say I live with diabetes (often saying I live well with diabetes, never struggle with it. I refuse to even suggest for a minute that I am suffering with or from diabetes and will correct anyone who suggests otherwise.
But is that undermining the seriousness of it? And is it ignoring the days where it does seem like a battle – and an uphill one at that.
I refer to diabetes as a condition, never a disease. Is that the right terminology? And why do I do that?
According to this piece at Health Writer Hub a disease is an …’ abnormality in systemic function…that causes both physical and emotional signs and symptoms’. A condition is …’an abnormal state of health that interferes with the usual activities or feeling of wellbeing’. Both are actually correct when talking about diabetes, and yet I (and many others) object to using the term disease.
Perhaps we don’t want to be thought of as ‘diseased’ or as if there is something wrong with us and ‘disease’ does suggest that.
We want people to think we are superheroes who manage to not only thrive and excel with the condition (disease?) we have been dealt, but also demand that they don’t think of us as any different to everyone else and are given the same opportunities and choices.
Are we doing ourselves a disservice by appearing so ‘in control’ and, dare I say it, ‘normal’, when there is truly nothing normal about having to pretend to be an internal organ, day in day out?
I don’t for a minute want to stop being the empowered, confident, secure and capable person I am. But sometimes I do feel that in all my cheerleading efforts, I sometimes forget – or rather refuse to admit – that it can be tough.
And mostly, I wonder, and fear, that if we all are making diabetes look so easy to manage and impact us in such insignificant ways, do others not see and understand the urgency that we feel every single day in our desire to make things better? Who needs a cure if we look so bloody happy and competent with our little condition?
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July 13, 2016 at 4:37 pm
Bec
This is my paradox everyday…! Wanting to look empowered but not always feeling it. Wanting to look able to do whatever I want but never truly feeling it; and wanting my daughter to not feel that diabetes is a burdensome pain in the @$$ when I swear and curse to myself everyday that it is. It really does feel hypocritical and wrong but somehow – you just keep doing it because you know if you don’t what we live and feel is a fait accompli
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July 13, 2016 at 5:12 pm
Annabelle Leve
So true Renza – I have long felt the same way(s) – I can do anything but god it is bloody hard at times and really NOT FAIR. But it is what it is.
I often feel torn when filling out forms that ask about a ‘disability’ – if the question was (for example) do you have any medical conditions that sometimes require extra support or consideration then perhaps, but I have never called it a ‘disability’. At my workplace there are conditions for people to get special consideration for any conditions they ‘suffer’ (yes, have problems with that word as well) – this is the advice provided that might relate to those with diabetes:
Long term difficulties
If longer term conditions or circumstances are affecting your assessment performance, we have a number of specialist services to help you. These include services relating to health, safety and wellbeing and financial support and the Disability Resource Centre who will assist with identifying and implementing appropriate adjustments for students with ongoing medical conditions or disabilities.
Many students will feel reticent about approaching the ‘Disability Resource Centre’ and I don’t blame them – for all the reasons you discuss. And yet most of us will acknowledge there are times when you wish people would understand and give you just a bit of recognition when things are not working so well.
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July 13, 2016 at 5:17 pm
Anna
My pancreas is diseased and left me with this condition! I want to be treated as “normal” but am constantly living a double life of outside normal and inside struggle.
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July 13, 2016 at 6:27 pm
Dr.Marcus Saeemann
so true…
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July 13, 2016 at 9:20 pm
Wendy
This is SO true. Especially at work I have always wanted to feel like I could just do my job and do it well. Most days I can but there are the few days now and then where I just struggle. I have been pulled aside and quizzed as to why I’m not performing so then I have to explain what’s going on. But after that conversation I feel I have been labelled or wrapped in cotton wool. It seems in those surrounding there has been a seed of doubt planted in their mind in regard to my performance and reliability. I’m just like anyone else. We all have off days… Diabetes or not!
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July 13, 2016 at 9:37 pm
Flipper
Great blog! I feel exactly the same way. I spend a lot of time convincing myself & others that T1 doesn’t stop you doing anything you want then feel bad that others just don’t get what a struggle it can be!
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July 13, 2016 at 11:18 pm
Annabelle Leve (@amlev2)
Hi again Renza – I’ve posted a response on my own blog https://abelspace.wordpress.com/2016/07/13/t1d-diabetes-is-a-persistent-pain/
I love that so many of us feel the same way and get to share this in the here and now!
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July 13, 2016 at 11:32 pm
bluesingingdragon
It’s a tricky one and I struggle with it daily – not just for me with my T1D, but also for my son and his rare illness/condition/disease. Semantics are important when it comes to how we deal with the hand we’ve been dealt, but not necessarily the be all or end all of it. Great post x
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