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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Not Doing Enough

I don’t have the courage to tell anyone I have this horrible disease.

Shared on My Diabetes Secret

Seeing stuff like this come through on My Diabetes Secret reminds me that we aren’t doing enough for the diabetes community. I don’t know exactly who “we” are, and I don’t know what can be done to help people like this, but I know the status quo is not sufficient.

How might we create a more accepting culture for people living with a chronic disease?

How might we empower people to feel they are in control of narrative surrounding their disease?

How might we better battle stigmas that create the shame that hides public disclosure of a chronic condition?

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Diabetes Blog Week 2015 – Keep It To Yourself

Many of us share lots of aspects of our diabetes lives online for the world to see. What are some of the aspects of diabetes that you choose to keep private from the internet? Or from your family and friends? Why is it important to keep it to yourself? (This is not an attempt to get you out of your comfort zone. There is no need to elaborate or tell personal stories related to these aspects. Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.)

Diabetes Blog Week – May 12, 2015

It’s funny, despite having presences on a variety of social media platforms, my enthusiasm for sharing aspects of my diabetes life waxes and wanes. With efforts like #dayofdiabetes, sharing is paramount. But I can just as easily go a week or two without posting a Dexcom picture on Instagram or mentioning diabetes on Twitter. Outside of Dayle’s own diabetes experiences, I don’t necessarily consider anything off limits for the sake of keeping a piece of me private. Sometimes I simply don’t feel like sharing anything because I don’t feel like sharing anything. Boring, right?

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Diabetes Blog Week 2015 – I Can

In the UK, there was a diabetes blog theme of “I can…”  that participants found wonderfully empowering.  So lets kick things off this year by looking at the positive side of our lives with diabetes.  What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could?  Or what have you done that you’ve been particularly proud of?  Or what good thing has diabetes brought into your life?

Diabetes Blog Week – May 11, 2015

My initial response to this prompt is quite predictable, especially considering my upcoming nuptials. The thing is, finding the person I will spend the rest of my life with isn’t something I’ve accomplished despite diabetes, it’s because of diabetes.

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Stickiness

For some reason, there’s been a lot of activity on My Diabetes Secret over the past few days. Actually, I should specify, there’s been a lot more activity than normal on My Diabetes Secret.

I keep an eye on the likes and reblogs to make sure I’m doing everything I can to ensure this blog reaches the people who need it most. Yet, for reasons I can’t decipher, the number of new followers has increased at a significant rate. I wish I knew what made this stuff “stick” with the diabetes community on Tumblr. I wish I knew what drives people to share, reblog, engage, and interact. I wish I could figure out why this entire experiment actually, kinda works.

My hope is that every single reblog represents a “me too”, and every single like represents a “I hear ya”. My Diabetes Secret isn’t a place to try and one-up the struggles of others, but the shared emotions are clearly connecting.

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Presentation Deadline

I feel safe sharing this with you, because the people that need to hear this aren’t reading this blog.

My hope, coming out of my AADE presentation this summer, is that we can get those numbers to change.

To that end, I need your help.

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Reduce Stress and Anxiety

“Having diabetes can be very stressful, and it can bring out all kinds of emotions. Denial, depression, and anger are feelings many people with diabetes have experienced. When you’re first diagnosed, it’s normal to believe there must be some mistake. it’s also normal to be sad or angry over the lifestyle adjustments it requires. The inability to get beyond these emotions, however, can put your health in danger.”

Of all the things I wish I knew when I was diagnosed, I think this is at the top. I don’t remember ever feeling particularly “down” about my diabetes in the early years. Maybe jumping right back into my classes at Virginia Tech prevented any opportunity to truly contemplate what the future of my life would become as a result of this disease. With so much of my life undetermined, I think I just added this to the list of things I had to consider.

These types of nuggets of advice are always tricky for newly diagnosed. There’s so much information out there, it’s easy to become overwhelmed. If you perform an image search on the word “diabetes”, you’ll get the clichéd injection pictures next to amputations. If you look for non-medical perspectives on diabetes, there’s a whole mess of blogs, and patient communities to discover.

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