‘When I hear from and read about you and other adults like you with diabetes, you make me think everything will be okay.’
This comment was made to me recently – and not for the first time. I have heard this more times than I care to remember (directed to me as well as to others with diabetes) from others (often newly diagnosed) with diabetes, as well as loved ones of people with diabetes.
While I believe that it is often said as something that is meant to be complimentary, it has become one of the comments I absolutely dread hearing. It’s not a new thing – I have heard people say things like this and similar for as long as I have had diabetes. And I know that I have, in the past, said things like this too – especially around Kellion medal time each year when I get to meet with PWD who have lived with diabetes for far more years than me.
But in recent times, I have stopped saying it, following a conversation with someone who received a Kellion medal this year and read my post about the ceremony. ‘I have nothing to teach you,’ they said to me, as we were chatting. ‘All I do is live with diabetes. I don’t have a choice. It’s not remarkable. It’s just my life. And I get annoyed at people who want to give me a medal for simply living with diabetes.’ We both then giggled at their choice of words because we were, of course, actually speaking about (Kellion) medals, but I think I understood what they were saying.
And it got me thinking to how we speak about others living with diabetes and other health conditions, and what we are saying when we start to use words like ‘inspirational’, ‘brave’, ‘amazing’, ‘incredible’, ‘magical’, ‘motivating’, ‘heroic’ and all the other syrupy superlatives you can imagine.
I have used every single one of those words at some point when talking about other PWD. And people have used these words when talking about me, and I can tell you all I feel is uncomfortable and like an absolute fraud. I’m none of those things. I’m a bumbling mess most days. So it doesn’t sit well at all if the only reason that someone is using hyperboles to describe me is because of diabetes.
And then when someone goes a step further and starts to say a PWD make them feel better about themselves, their situation, or their (or their kid’s) future, that’s just placing a whole lot more expectations on the shoulders of that person with PWD. Or, when someone says that they want to learn from us, suddenly on top of everything else, we also have to be teachers? More weight on an already extremely heavy situation.
Of course, there is a darker side to this. Not always are we seen as beacons of inspiration. In fact, sometimes, people want to hold us up as examples of ‘what not to do’. I cringe every time I hear the suggestion that newly diagnosed PWD should meet someone with diabetes-related complications as a warning of what can go wrong. Absolutely no better is the idea that rather than underlining diabetes-complications as a threat, it’s a good idea to look at PWD living with complications as examples of proof that life goes. I’m pretty sure that’s not what anyone is thinking when they get up in the morning and go about living their life with that complication.
Suddenly, alongside the responsibility of doing diabetes and all that comes with it, (complications or no complications) we are also now responsible for making others feel better and more knowledgeable about their own situation? That just seems like another task to add to the endless demands diabetes already places on us.
And it also seems a little unfair.
It’s true – there are days that some of us may be brave; we may be seen as inspiring; we may amaze you. Some days it may even be me who seems to be some of those things. But not if the only reason you see us like that is because we are living with diabetes. Last Friday the fact that I got up and out the door and to the airport before 6am in matching shoes, stockings, lipstick within my lip line, and a pencil dress that wasn’t wrinkled is actually quite remarkable, and I would be grateful for someone to acknowledge that. Oh, and a couple of weeks ago, there was a spider the size of a saucer on the ceiling of our bedroom and I more than capably dealt with it. You may call me brave for that, because: Australian wildlife. But nothing to do with diabetes.
We are people with diabetes and we do what we can to manage that however possible. We are not here to make other people feel better about their own lives, or allay concerns they have about their loved ones with diabetes. We’re not here to be a teaching moment. An equally, we’re not here to be a cautionary tale. We are just here to muddle through with the lives we have; lives that contain diabetes.
I have always loved this song.
5 comments
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October 23, 2018 at 10:18 pm
Jon
I have been type 1 for 35 years. To my knowledge I’ve never met someone else with type 1 diabetes. Never been able to ask them what it’s like for them. Do they do things differently? I can see why others might find comfort in knowing or hearing from someone else with the same condition and make such a comment that you dread to hear. It’s a shared experience of something that’s not really that common. A problem shared is a problem halved. I think that’s why such comments are made. If my experience or long term complications can provide comfort to someone else then I’m happy to share them. I would see that as something good coming out of this awful disease.
I only found out about the Kellion medal recently and jokingly asked my HCP if it was given in shock that a type 1 has lived that long. She replied that living with type 1 is like a marathon. To have run that marathon for so long is an achievement. I like that explanation.
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October 24, 2018 at 12:31 am
Cathrine
You’re so right Renza. You have a wonderful gift of putting into simple language all of the complicated thoughts and feelings PWD have about this condition.
The reason I don’t tell people I have T2D is that I don’t wish to be pitied OR feared.
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October 24, 2018 at 10:28 am
StephenS
As someone who published a line today about people bravely living with diabetes, thanks for blowing up my blog post.
Just kidding… if it needs to be blown up, blow it up. In the meantime, I’ll think about what you’re saying here. I understand how it makes you feel… I just don’t want to miss a chance to make someone feel like their efforts to live a good life with diabetes should be celebrated.
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October 24, 2018 at 6:27 pm
rivagreenberg
Renza, I agree and I don’t agree; things are seldom that black and white. You put well in words the feeling that we are not superheroes just for living our lives nor should we have to be beacons of inspiration for others. Yet, having stepped into the public life of living with T1D I think one can expect others to hang their hopes on us and personally if I can provide a teachable moment I’m happy to do so. It is the sweet gift for me that comes from the daily slog.
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October 30, 2018 at 4:42 am
Blood Sugar Trampoline
My response to that comment is usually to say “You know there are loads of us out there, you just need to know where to find us” and then I list lots of blogs and websites they can look up. I’m very uncomfortable with this situation because I feel like these people need to get out more to meet more pwd-does that sound awful? 🙁
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