About Leadership

I often wonder if I deserve to be a voice in the community when I can’t keep my blood sugars in range. Shouldn’t the leadership be left to those who actually succeed at controlling their diabetes?

Shared on My Diabetes Secret

Here’s my two pennies on this one.

The diabetes community is the sum of its parts. It’s what we make of it, together. Sure, there are some more established, more prominent voices that are the result of years of advocacy, networking, and quite frankly, working tirelessly and sometimes thanklessly to advance and elevate the discussion around diabetes. But community leaders are only respected because of the reputation of the community they lead.

The diabetes community grows because more people join the conversation. The diabetes community thrives because of the variety of opinions and perspectives and experiences that are brought to each conversation. The diabetes community is one large, loud, collective voice. The diabetes community is not a few faint voices trying to stand out among the masses.

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Enhancing My Diabetes Secret

I wrote this for My Diabetes Secret, but I figure it’s worth sharing here, too, since I repost a lot of stuff from that blog. For context, I’m constantly thinking about how I can improve My Diabetes Secret and My Chronic Disease Secret. Simply being is not enough. There are better ways to connect people with the blog, each other, and if necessary the proper resources they need. Am I doing everything I can to serve whatever mission I have in my head with all this stuff? Probably not, but I’m going to keep working to make it better. I can promise that much.

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What Ever Will?

I saw my endo today. I tried so hard to drop every necessary hint for her to see how depressed I am. She didn’t understand. She told me to try harder. She asked what motivates me. The truth is, I don’t know. You’d think wanting to live would motivate me, but if even that doesn’t work, what ever will?

Shared on My Diabetes Secret

I feel like I really need to talk to someone, but every time I start to tell a friend about how much I’m struggling, they change the topic or ignore it completely, so I’ve stopped trying to open up to people because the reality is, no one cares enough to listen.

Shared on My Diabetes Secret

How might we provide better venues and avenues for people to share what they are feeling? When they need help most, are “we” failing the diabetes community?

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Do I Have Your Attention?

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.

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Basic Emotions

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.

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Two Sides of the Same Coin

At the end of the day you’re alone, nothing’s going to change that. But the truth is we are more alone than them, yes we might have each other (diabetics), but we are alone. No one understands, not family, friends, not even we fully understand. Diabetes is too often overlooked, not understood, and many other things. I would never want nor need anyone’s sympathy, but for once I would like for someone to understand! What it’s like to take insulin, feel a low, a high, or even no what it’s like to sit through a health class that’s directed towards a diseases you have (even though they don’t know what they are talking about). We are all alone, but we are more alone than others. // Shared on My Diabetes Secret

What is courage? I think courage is in the eye of the beholder. As a diabetic I’ve never met nor seen anyone see diabetics as courageous people. I think that’s because we are courageous every day. Not by choice but by faith, so the next time you get judged, remember, we are all COURAGEOUS. // Shared on My Diabetes Secret

If you feel the need to share, My Diabetes Secret will always be here.

The same goes for my peers living with any other chronic disease at My Chronic Disease Secret.

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A Closer Look at My Chronic Disease Secret

It’s been a couple of weeks since I published My Chronic Disease Secret and offered a place for anyone impacted by a chronic disease a platform to anonymously share whatever secrets, fears, or thoughts they had. At the time I had questioned the lack of a “My Cancer Secret” equivalent to “My Diabetes Secret”, and eventually embarked upon building something not just for people touched by cancer, but the entire chronic disease community. While it’s too early to call this venture a failure or success, I’ve noticed one immediate trend that sets My Chronic Disease Secret apart from My Diabetes Secret: activity.

The amount of initial interest in MCDS (I need a better abbreviation) simply doesn’t compare to the initial impact My Diabetes Secret made. Maybe I didn’t do a sufficient job explaining the reasons behind its existence. Maybe it takes time for each community to discover a new digital outlet. Maybe a platform for all chronic diseases isn’t needed. Maybe I overestimated the potential for something like this. Maybe people surviving cancer aren’t using Tumblr to connect with their peers. Or, maybe I’m overreacting and two weeks is not indicative of what this effort will yield.

Despite all of those maybe’s, I think there is a bigger takeaway that furthers the assertion that diabetes community is a bit of an online outlier. We’re more connected and more active than most chronic disease communities. I’ve lost count at the number of times I’ve heard that the diabetes online community is the benchmark for patient engagement and interaction. That isn’t to say that strides haven’t been made through breast cancer or rheumatoid arthritis communities, but perhaps there are only a select few that can command the online audience and interactions as diabetes, breast cancer, and arthritis. Maybe?

To be fair, I haven’t spent days on end searching for patient blogs from the entire chronic disease spectrum. Then again, maybe I should. That would give me a better understanding of what is and isn’t out there, right? All of these assumptions, maybes, and perhaps’ are based on anecdotal conversations I’ve had over the past few years.

All this being said, I’d rather have a place for all and see it not get used than a place for some leaving those left behind to think they are alone. I’m sure My Chronic Disease Secret will find its place one day – it’s just a matter of time.

Somewhat related, today has been designated as a Check In Day for the diabetes community. I’m encouraging everyone to leave a comment on every diabetes blog they read today. Even if it’s a simple “Check!”, say something. Use this opportunity to show how connected the diabetes online community truly is.