Do I call this an open letter? Or a rant? Or a statement? Who knows- but here I go.
But I like letters- it makes me feel like they are going somewhere. and I already know this will be filled with “why me’s” and pointing fingers and things people don’t want to hear- but I honestly do not give a shit right now.
To Diabetes Healthcare Providers and Diabetes Clinics,
You tell us to adhere to a specific type of care without knowing the factors that impact us or seeing if we have ideas.
You throw around the terms non-compliant and uncontrolled diabetic.
You shove statistics in my face with saying how do we get them to change.
You rarely ask us how to fix things or what our thoughts are- only certain people.
But I have a question for you– what if- just what if- it wasn’t all the patient- it wasn’t all on me.
But why is all of the blame on me-
Why is the finger only pointed at me-
Why don’t you ever look within and think- hmmm- maybe it’s the system- maybe it’s me too- maybe there are other factors at play– Maybe there are things that I could do to change these statistics and not just blame the people who live with this every single day.
The more experience I have in healthcare- the more I question these statistics- not that they aren’t valid- but where we go from here.
You tell me to adhere- but the healthcare providers only stay in your clinic for a short while- and I cannot build a relationship- if you aren’t keeping providers- how do I not get lost through the cracks?
You tell me to adhere but many of you might spend 10-15 minutes with me- 20-30 if I’m lucky. Or even less.
You tell me to be early and sit in the waiting room- but you are often late- but act like I should abide by that.
I see you with your research saying the transition from pediatric care to adult care isn’t great- and I see transition clinics or coordinators pop up more-
But what happens when it’s too late for a transition clinic for me- because where I lived there wasn’t one?
So please- what happens if I missed that window that was out of my control? Do I slip through the cracks again? What happens if I’m just an adult and these things happen? Does it not matter?
You tell me as a young adult with diabetes that I’m at a higher risk for eating disorders- but you rarely talk about the markers for an eating disorder and that the markers for “proper” diabetes management are almost identical.
You tell me that in the teen and young adult years that my A1C will go up.
You tell me in your research that time between endo appointments for me is over a year- do you ever ask why? Do you wonder why we don’t want to come back? Or just say it’s because I’m not compliant?
You tell me that what I do during young adulthood is increasing my risk of complications- but all you do is use them as fear tactics- and not explain that there are people out there with complications- and it’s honestly not the end of the world- you don’t tell me where do I go from here.
You throw out these studies and these stats at me with comments of implications- but are you doing anything with these implications? Besides reminding us that we are what you called non-compliant and uncontrolled?
How could you know the whole story when you barely spend any time with me in the appointment- when endos from your clinic don’t stay long and I am unable to build relationships with them? When my insurance was so specific about timing.
You know- specifically when I saw the statistics about diabetes care for young adults- I was shocked and saddened by what I saw- specifically about how long we go between appointments- the A1C’s I could understand.
But now- I am not surprised- now I understand it- but yet- the finger is always pointed at me- yet you throw me into a statistic- without even asking- could part of it be me?
Because when I found out my newest endo (number 8 in under 3 years)- is leaving- my heart sank again- because- it hurts- and I’m having to catch myself because I’m saying it must be me. I must be the problem. But it’s not only me.
But I show up to your appointments with my patterns figured out and my data printed and my questions ready- and asking for your input to improve my care. I want your input and feedback and help troubleshooting when I’ve tried to figure it out but can’t.
I spend time looking for healthcare providers and making sure they are the right fit for me. Because I want a good relationship with one.
And between finding right fits and logistics at clinics- I feel like there is no winning. And you often label me noncompliant or uncontrolled- but you barely know me- you just see my file and pass me along to the next person- I wonder if it will work out- I wonder if they’ll stay.
For you see- I am burned out– now I just want to go rogue. I have little desire to go to a diabetes clinic now- for I have tried- and it has all been on me and the people in my life- with very little return- with not even asking me my thoughts or experiences or input.
But honestly- it’s also you- yet- where are the statistics and studies on the providers? On the clinics? With implications and feedback and ways for them to improve?
According to some there is an epidemic with non-compliance- but it’s all our fault. It’s all on us. But most of you do not live through this every day and every night.
But you do not look into our lives- which are so different- you do not focus on anything else besides the diabetes-
But apparently- it’s just non-compliance and just uncontrolled-
But you’re missing something- you’re missing that there is more to the story.
Because if you want me to improve- well you should too.
Hey you! Yes, you!
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