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.

In the coming days and weeks I’m going to roll out My Disease Secret platforms for a number of patient communities. Rather than one all-encompassing platform for everyone, I hope to provide a more focused effort to let people share what they are feeling with others who get it. I don’t know what this will mean for mydiseasesecret.com – maybe it will be a place for me to offer commentary on what I’m seeing across the Disease Secret ecosystem. There’s plenty of time to figure that one out.

What matters is that I still think this idea can work; it’s just a matter of fine-tuning how I approach other patient communities. As I enter conversations I’ve never been part of before, I’m going to rely more and more on my fellow patient advocates for advice and guidance.

Transparency is key with all of this, and I will continue to be open about what I’m thinking and how I’m approaching each of these opportunities. If you have any feedback or opinions about this stuff, please let me know.

3 thoughts on “On Constructive Criticism and Showing Respect

  1. Sounds like a great and selfless effort. I wonder, though, if you may want to solicit input from those communities. For instance, we have one “Secret” site for Type 1 and Type 2 diabetes…. but would one “My GI Secret” site suffice, or would it be best to differentiate the many variations into separate sites? Do brain cancer and toenail cancer have enough in common to share communities? I don’t know the answer to that — though I suspect the HealtheVoices attendees may be able to help.

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    • I’ve got a diverse group helping me out for the first batch if sites. As I expand, I’ll look for more input from community leaders and folks I know have more empathy and experience that I do. Part of that bit about respecting each community is knowing I, myself, won’t have all the answers.

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