As a diabetes educator/healthcare provider (DHCP) I’m observing that the rapidly growing world of online diabetes social networks is helping people with diabetes (PWD) find support and feel supported. People are connecting, building relationships and feeling more positive about their diabetes. I’m delighted to see this trend!
As a DHCP I’ve long realized I can’t walk a mile in a PWD shoes. I can’t know what it is like day in, day out to deal with this challenging and relentless disease. But, what I do know is that we can learn from each other to change the dialog between providers and PWD to be more positive, more supportive. In my Dialoging about Diabetes blogs I’ll interview diabetes activists and social networkers and ask them to offer ways DHCPs can change our ways to better support PWDs diabetes care efforts and make living your real life…just a bit easier.
Goal two is to enhance the two way street - Help more PWD get connected and encourage more DHCPs to open the doors of social networking to PWD.
Here’s my dialog with Haidee S. Merritt who’s had T1 diabetes for 38 of her 40 years. She’s using the oldest method of social networking—visual expression—to communicate with fellow diabetics. Through shared experience and humor, she tries to illuminate how diabetes influences—or is influenced by—significant events in a person’s life, as well as day-to-day occurrences that might otherwise stay internalized. Get a chuckle every Sunday - view Haidee's humor at diabetesmine.
HW Q: If you could give DHCPs a few tips to improve our understanding of the challenges PWD face in managing diabetes while living their real life, what would you tell them?
HM A: You hear about people splitting hairs about being a diabetic or a person-with-diabetes, carefully emphasizing that we are not one and the same. For me, it’s clear that the two can’t be separated: I have never known a day without diabetes and I have no idea who I would be as a person without it. Diabetes has shaped me, negatively and positively, into the person I am today.
So, to answer your question about managing diabetes and living my normal life, well, let’s just say there have been periods where this has been easy and periods where I fight my disease—or life—every step of the way. I can say with confidence that diabetes has never stood in the way of something I’ve wanted for myself. I have always needed to move forward, hit obstacles head on and make the best decisions possible given all the variables and known outcomes.
I think DHCPs should be straightforward and honest with diabetics; I have always wished they would give me more of an opinion. Give me advice as if they were standing in my shoes. Funny, when I was younger one of the questions I would always bring to appointments was whether I should start college after high school or travel the world? Would I be hooked up to dialysis machines in my older years and live to regret possible opportunities in the short term? I hated that no one would give me a straight answer, but I have no problem offering this advice. For example, if you or your diabetic child has the desire (and means to, of course) travel, then I say go for it. Push yourself out the door and live life to the fullest until…well…you can’t.
HW Q: How can DHCPs be more empathetic, understanding?
HM A: At the risk of sounding like a bitter old crow, I feel that we, as individuals, are nothing more than a collection of our own experiences. Sure, there are certain levels of understanding we all can reach, but our response to things, our emotional reactions to certain circumstances, a memory sparked from a sound or a smell is so beautifully singular that I’ve never felt the need for my health care providers to empathize or understand me at all.
This conviction is even truer to me as my DHCP team has—miraculously—come together. Today all of my team members, nurse, physician, assistant and diabetes educator, also have type 1 diabetes. I’m sure it won’t surprise anyone to hear that the relationship with my current providers is stronger than previous with non-diabetic providers.
What is more revealing is how often these relationships remind me that this disease is very much specific to the individual. We can all share our experiences during a visit (which I love to do) but chances are that one form of treatment will work for one of us and not another; that one complication will manifest in one and not the other; and so forth.
HW Q: How do you feel that social networking/being connected online can help people feel supported, possibly improve your/their care?
HM A: I think it’s fantastic for people who use the medium. If someone asked me what I thought of books coming out about diabetes (back when they emerged, of course), I would say the same thing: great if you like to read books. More knowledge is better, sure; but more mediums for that knowledge is better too. Speaking personally, there’s an overwhelming amount of information available, to such an extent that I really just shut down. This doesn’t speak highly of my coping skills, I know.
I’m visual, what can I say? As an artist, there are more direct ways into my mind, better routes to take with more reliable surfaces that that information can travel down. Pictures stick in my mind like Post-It notes. No, graphs and tables aren’t the same: it needs to be a humanized concept, somehow interpreted with a twinge of emotion, whether that be anger, sadness or humor. It’s a means of understanding in a flash. An image can say things that words simply can’t.
That I’ve been able to share my work with the online community has been tremendous. It actually feels like a lightening of my burden. I have a Post-It note stuck to the wall of my studio that says, “Cartoons don’t have to be funny.”
Thanks for sharing, Haidee! And to see more of Haidee's humor.