On Constructive Criticism and Showing Respect

Earlier this week I spoke at a meetup for the Bay Area Chapter of Medicine X about My Diabetes Secret and My Chronic Disease Secret. You can view the slides from my presentation here. I talked about the original inspiration for My Diabetes Secret, shared some of the submissions I’ve read over the past couple of years, and covered the evolution of the design for the platform – notably making a better effort to put the resources page more visible.

As my presentation moved into the challenges of My Chronic Disease Secret, I asked a number of questions of the audience to try and start a conversation about what about this anonymous sharing platform works and what needed to be rethought. Does an anonymous sharing platform like this only benefit the diabetes community? If not, how might we better engage other disease communities? How might we improve upon the task of providing a platform free of judgement, shame, stigma, and identity to the larger chronic disease community?

The resulting feedback I received was exactly what I needed to hear.

Some don’t see what they are living with as a chronic disease, and may not identify with a site named “My Chronic Disease Secret.” Some haven’t accepted their diagnosis. Some don’t want to, or can’t relate to other disease communities. While there’s much we can learn from each other across diseases, these’s still something to being among your peers. “Me too” can only go so far – I think I stretched that philosophy too far with the initial approach I took to My Chronic Disease Secret. In applying the My Diabetes Secret formula so broadly, I didn’t respect the individual nuances of each patient community. It was wrong for me to think that I could reach everyone at once. This is a process, and it takes time.

The funny thing is, I’ve been having these doubts and criticisms circling in my head for weeks, if not months, but hearing these points from people who were brand new to this idea made all the difference. The people at this meetup only knew of My Diabetes Secret what I was able to convey in 20 minutes, their perspective was fresh. And ultimately, their feedback is part of the reason I’m writing this today.

Part of the reason My Diabetes Secret works is that it’s focused. Instead of trying to speak to everyone, it just reaches one community – people impacted by diabetes. And while my initial ideas about expanding the platform were similarly focused, I got distracted by the prospect of trying to help everyone at once and ended up satisfying none of my initial goals. With all of this in mind, I’m going back to my initial question that started this whole adventure:

I created My Chronic Disease Secret because I felt other online disease communities could benefit from a platform to share their feelings anonymously, free of judgement, shame, or stigma with each other. But I didn’t give these communities the respect they deserve in providing them with their own respective platforms as I had for the diabetes community. If diabetes has its own space, why not cancer? Why not arthritis? Why not mental health conditions? So…I’m going to do that.

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“Only”

I “only” have fibromyalgia. I do not feel like my chronic illness is severe enough (even though it is disabling and my life has been drastically changed from it) compared to other people’s illnesses. My best friend has RA and MS and I feel that even she does not take my illness seriously because it is “just fibro”. If it is “just fibro” than why am I in so much pain? Chronic illness is isolating enough without having an unspoken hierarchy of who has the worst disease.

Shared on My Chronic Disease Secret

I remember, early in my diagnosis, hearing something along the lines of “at least it’s not cancer”.

I’ve seen plenty of back and forth within the diabetes community judging whether it’s “better” to have type 1 or type 2 diabetes. Or if it’s “better” to be diagnosed as a child or later in life.

I’ve seen far too many comparisons in and among various disease communities attempting an informal and quite frankly inappropriate ranking of diseases.

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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.

About My Chronic Disease Secret

On Monday I asked the Internet why there wasn’t a “My Cancer Secret” similar to My Diabetes Secret.

Yesterday, with some help, I took matters into my own hands with the launch of My Chronic Disease Secret.

I wrote an introductory post, which you can read by clicking on this link. Here’s the punchline.

But diabetes isn’t the only chronic disease impacting lives around the world. Where is My Cancer Secret? Why isn’t there a My Cystic Fibrosis Secret? Shouldn’t there be a My Depression Secret?

Here it is.

My Chronic Disease Secret is building upon what My Diabetes Secret started, offering a safe place for anyone living with or impacted by a chronic disease to share their secret free of shame, of stigma, of judgement.

More will surely follow as this gets off the ground, but I feel good about this one. Given how much of an impact (I believe) My Diabetes Secret has had on the diabetes community, it only seems natural, and fair, to give the rest of the chronic disease community an opportunity to share what they are feeling.

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