This week, I'm struggling with how society sees me and sees my diabetes and I'm struggling with the whole "what's the point in advocacy" disillusion. I’m calling it Diabetes Survivor's Guilt.
It started with a couple of events on Tuesday that left me beaten down, deflated and with nothing left to fight for the things I need to live and thrive with diabetes. And nothing left to fight the public perception of people with diabetes.
It all started with:
It began with hearing from my peers that my health service discontinued funding for a CGM for all patients who had been using it with no advance notice and no regard for those who rely on it. After the complete shut out for adults with diabetes of the Libre reimbursement scheme, I just thought: I can't do this anymore!!!
Then, I received an invitation, one I should be excited about because it's diabetes health care moving forward and I'm very honoured to be included. But all I could think about was what’s the point? It won't get funding! It'll sit on a shelf and gather dust like so many others. I predict that two years from now we'll still be asking for the funding for it. Maybe it'll win a Pulitzer for fiction?
Then, there was a tweet from someone with a medical degree, maybe even a bunch of them, that would normally get me all fired up with “You should know better than to spread bad information about diabetes” responses but all I could think was “what’s the point?”
There’s only so many times:
There’s only so many times I can respond to the many, many misinformed tweets/comments with spunk and sass before I start to feel that there are probably five more misinformed people hiding in the shadows, so what's the point?
There’s only so many times I can listen to chatter about diabetes prevention strategies before I start to doubt what I know to be my facts. Maybe I did cause my diabetes?!?! Before I start to believe that I'm a failure because I was diagnosed.
There are only so many times I can hear that I’m costing my health service 10% of its total budget before my response goes from “So! And???” to “I’m sorry I cost so much, please forgive me".
I'm/We're fighting the same ignorance over and over and over. I'm repeating the same information again and again. And I'm/we're getting nowhere.
So What's the point?
What's the point of trying to explain to people that what I need to manage my diabetes is what I need, they are not luxuries.
What's the point in telling people that I didn’t cause my diabetes, that healthy choices won't make me cost less?
What's the point in saying I'm a person with diabetes but I'm not old, not obese, I have all my limbs and both my kidneys, no I'm not what you were expecting, when the images that are displayed to represent diabetes are contrary.
If you tell a person enough times:
If you tell a person enough times that you cost the health service 10% of their entire budget They will start to feel Diabetes Survivors Guilt.
If you tell a person enough times that their diabetes should've been prevented or reversed, you will start to believe it. Despite the truth!
If you tell me all of this enough times, not just with words but with actions also then I will start to believe that I don’t deserve empathy, understanding or treatment and maybe I’m the one who’s misinformed?
I just can't fight it today! But giving up is not an option really is it?