Andy DeLaO, also known as the Cancer Geek is my guest this week. We discuss his journey to oncology, the many, multiple hats he’s worn within the landscape of healthcare, the value of valuing the patient’s input, and the origins and potential of the #MyIdealPtExp discussion. Enjoy.
Follow Andy on Twitter @cancergeek.
For more elaborate thoughts from Andy, go to cancergeek.wordpress.com and for more information about #MyIdealPtExp, read this post about Andy’s Anti-Patient Friendly Experience and this post about #MyIdealPtExp.
And, you can follow the ongoing discussion around #MyIdealPtExp on Twitter.
This evening I learned about “the science of capturing people’s attention” from Ben Parr. While his presentation methods leave something to be desired, the subject-matter was certainly interesting. By the end I was wondering if I was doing a good enough job capturing people’s attention when (if) they visit mydiseasesecret.com, what could be done to keep someone’s attention when they get there, and what can be done to get them to come back.
I’ve been thinking a lot about how to improve My Chronic Disease Secret, its reach, its impact, its purpose – improve its everything.
I believe that people living with or impacted by chronic diseases need a safe place to be honest about what they are experiencing without the fear of shame, guilt, or stigma. I believe that sharing these secrets not only helps in the immediate as a form of catharsis, but also by association – finding out you are not alone is a powerful experience.
I think that while there are other similar outlets for anonymous confessions: r/confessions feels like a competition, the Secret app is built upon your existing connections on Facebook and through your email who are also using their app, which makes it difficult to truly broadcast and connect with the broader community. And while the Postsecret forums do, in a way, support anonymous secrets, there isn’t a place that calls out or highlights secrets for the chronic disease community.
This weekend it dawned on me how ordinary my insulin pump feels. I think I had built up the new visibility of my invisible illness so much that I imagined wearing this device would be the equivalent of a Presidential motorcade – it’d be hard to miss. But the truth is it’s just another thing to put in my pocket.
After my phone, Dexcom receiver, wallet, and whatever else I need in close proximity, my insulin pump isn’t that big of a deal.
Of course, I have the luxury of saying this because I’m a guy. It’s a bit of a challenge finding clothing that doesn’t include some kind of pocket. I see first-hand how managing an insulin pump as a woman presents its own unique challenges.
Sometimes I wonder if I’m better off remembering what life was like before my diagnosis. I don’t have many specific memories that are tied to food or a carefree lifestyle that didn’t exist before regular insulin injections and blood glucose checks defined my routine, so it’s not as if I can directly attribute a loss of life’s joys to diabetes.
I assume this kind of thinking, that diabetes is a thief, among the newly diagnosed. When the changes required to survive are still raw, it’s easy to draw immediate comparisons to a life that once was. I’ve lived with diabetes long enough that I don’t think about how my life has changed as much as how my life with diabetes has changed. I suppose it’s how I try to stay positive through all the easily-identifiable negativity. This Dexcom Continuous Glucose Monitor sure is great. Life with an insulin pump is a lot easier than managing insulin pen needles. The port light on my blood glucose meter is awfully handy.
Is it bad that I get excited at the mere sight of diabetes coverage in more mainstream outlets that simply “get it right”? It doesn’t matter what they’re talking about, but the simple idea that the topic of diabetes is reaching eyeballs of the un, or underinformed, makes me happy.
Today a few of my friends shared this article from NPR asking why insulin is so expensive. Last year this article about Sierra Sandison made a number of rounds across the Internet. Remember that dominatrix lady from CSI who also had type 1 diabetes? Maybe that was just me.
I suppose it’s telling that any factual coverage is enough for me, but we have to start somewhere, right?
This week I’m joined by Jen Savant for an informative conversation about Southern California Hockey fandom. The majority of the podcast actually focuses on food allergies, how her family discovered and adapted to a long list of combined allergies for her three children, the importance of a thorough investigation of food labels, and how she has grown as a food allergy advocate. I promise, after listening to this one you will come away having learned a lot. Enjoy.
Follow Jen on Twitter @aller_jen.
I have grand plans to categorize and eventually analyze the submissions to My Diabetes Secret and My Chronic Disease Secret based on this grouping of basic emotions. I would love to say things like “this disease experiences more anger than sadness”, or “fear and anger are the most common emotions of people living with that disease”*.
The prospect of categorizing those submissions makes me think about this blog and the range of emotions I’ve shared over the years. I know the early months (and years?) of chronicling life with diabetes was mostly filled with anger. I had a lot of confusion, frustration, and general not-happiness to get out in the open with the hopes of starting to better myself. Somewhere in the middle I found Dayle and emotional content of the blog likely shifted to calmer, more pleasant themes. I suppose that emotional output has largely been the same ever since.
I wonder if the emotional journey of most members of the diabetes online community follow a similar trajectory? So many stories from the newly initiated start with something along the lines of “I thought I was the only one…”, that fear and solitude can fuel all kinds of negative thoughts. But upon discovery of a community of people who “get it” and can empathize with your experiences, isn’t that usually when the flood of emotions begin? Because that’s when all the ugly stuff gets out of the way to make room for new, happy thoughts, right?
The validation that comes from sharing your experiences and hearing “me too” is too powerful to quantify, or qualify. It’s just fantastic. I know it’s impossible to provide that opportunity for everyone living with a chronic disease, but I want to do my part to make that “me too” moment happen for as many people as possible.