I went to a talk last week given by a type 1 psychologist (you may have read my earlier post stealing from an article about her). She highlighted her own experience growing up with diabetes, and many of us in the audience (too many) could relate.
It doesn’t just happen to kids. After being diagnosed with diabetes, we have all faced a doctor or health care professional and gotten that absolute sense of being evaluated, judged, and found not worthy.
Is it something we did? Maybe.
Probably not.
Is it something we didn’t do? Maybe.
Probably.
Is it something we should have done? Maybe.
Maybe not.
Does it make us see the healthcare professional as our ally in our fight for health and normalcy?
Not me.
Does it make me have confidence in their knowledge, skill and expertise?
Nope.
Living with diabetes is not something I can do by myself. I need as much help as I can get from people I can see as my ally, my friend, my advocate, my resource, my guide. That is a fairly tall order for anyone to fill, and when I need my doctor to fill this role, perhaps I am asking too much of someone I see for less than an hour every few months or weeks.
I know there are some out there who can fill my tall order with gusto and with grace every day; my hat is off to you. Thank you.
It’s the ones who far outnumber you that concern me.
Because here is what I do need my doctor to be: understanding of the complexity and unforgiving perpetual nature of life with diabetes. That most often, I do nearly everything I’m supposed to do, and after a while, someday the plan that was working so well suddenly no longer works at all for me. That there are so many factors—seen and unseen, known and unknown—that there is no way for me to both live my life and manage my disease 100% of the time with 100% success. It makes me want to cry in frustration more often than I care to admit.
I need my healthcare professional to understand that most of the time it isn’t my fault that I’m not in range. I’m not trying to be irresponsible or deny my critical role in my disease management; I’m trying to be understanding of the fact that I can’t always see a kinked infusion set under my skin or a site stuck in scar tissue or even an infection that has not manifested itself. I’m trying to accept that those unseen unchangeable factors may just add together and shorten my life. While struggling with that understanding and acceptance, I don’t need a healthcare professional to purse their lips and remind me that I should keep my blood glucose readings in range.
I do need my healthcare professional to know about even more ways something I haven’t thought about may affect my blood glucose levels, and perhaps offer ideas and suggestions for ways I can head off or even avoid the resulting swings.
I need them to share the experiences they and their patients have had when faced with similar situations and similar road blocks and similar slippery slopes. I want to know that others are like me and that others have had days of success with the various tools my doctor shares with me. I don’t need to hear “my other patient could do it” because even though my doctor maybe didn’t say it, you can bet I heard the “so why can’t you”. I need to know how, and hopefully why, and what else I can try.
I do feel sorry for the healthcare professionals, though. They have to say the same things to different patients nearly every day. That has to be hard for them. Not as hard as living with diabetes, sure, but still, not a fun part of the job. I’m sure they’ve heard the same complaints and an unfair number of whines for as long as they have had patients living with diabetes. I do wonder how some of them get from that to judgmental, though.
The basic truth is: I’m not here to waste your time or to make you angry, Doctor. I’m just a person who needs your help.
So hold the judgments, please. I’m doing the best I can.
I would like to add that one of my doctors, Joe Prendergast, is one of the good guys. I appreciate his efforts throughout his career to empower his patients with his constant message: IT IS OUR TIME. Thanks Dr. Joe!
