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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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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The Informed Bubble

I saw a Facebook post from a parent celebrating the delivery of their child’s insulin pump and asking if Lantus would still be required once the transition to an insulin pump was complete. Of my many reactions to this, chief among them was confusion. Wasn’t it common knowledge that insulin pumps deliver basal and bolus? Isn’t this something that should be explained by a medical professional prior to filling out the paperwork and going down that path? If you’re sharing these sentiments on Facebook, shouldn’t you have learned this through DOC osmosis (DOCmosis?)? Wouldn’t you want to do as much research as possible before making a significant emotional and financial commitment to your child’s diabetes care?

But maybe that fact isn’t common knowledge. Maybe their endocrinologist didn’t take the time to explain the intricacies of pumping insulin. Maybe this is your chance to ask questions before things get real. Maybe I shouldn’t be so quick to judge.

Maybe I’m part of a hyper-connected portion of the diabetes community that seeks this information, that lives on the cutting edge of technology and discussion. Maybe I’m the anomaly, and the people who could use a little extra care and exposition shouldn’t be treated with the condescension that initially flashed through my brain.

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Your Diabetes Advocacy May Vary

It is reasonable to believe Diabetes Awareness is bigger than a diabetes awareness “month”, right? Living this disease day in and day out for over 12 years speaks more than an arbitrary allotment in a calendar. Sometimes speaking with one collective voice makes a difference (like ‪#‎DOCasksFDA‬), but individual stories, whenever and wherever they are told are just as impactful.

Also, your diabetes (advocacy) may vary.

To that end, please read Dayle’s post about her perspective on Diabetes Awareness Month. It’s pretty great.

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In light of some of the conversation happening on and around My Diabetes Secret, Cherise decided to use the platform she built to address some of the topics presented without giving an opportunity for the negativity to invade the weekly tweetchat.

One afternoon a car pulled up next to me and the driver rolled down his window gesturing to get my attention. He was holding up a small electronic device that turned out to be a Medtronic insulin pump. He wanted to say hello after seeing my license plate.

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What You Make Of It

I had a lot of thoughts about this comment. I asked Twitter for feedback and got some good responses there. I also shared this on Facebook and got some good feedback there as well. I felt like writing more, but then Dayle and Kerri said all I wanted to say. So you should just read what they wrote.

Finally, I would urge anyone blogging for recognition to consider if a blog is really the right outlet for their goals/needs. Blogging is a form of sharing what it is you want to say. It’s not necessarily a platform for making people pay attention. That’s their choice. If your words or your way of changing the world resonates with other people and is valuable to them, they will listen. And that’s what it should be about – not conferences or freebies.

Defining the DOC: Why Do We Blog? – Imperfect Pancreas


I started this site because I wanted to find some kindred spirits.  And that’s the reason I continue to write, and to try and connect.  It keeps the loneliness of chronic illness at bay and makes doing this diabetes maintenance thing easier.  Even though so many healthcare professionals think that my A1C is the most important marker of my success as a person with diabetes, I think my happiness is, and connecting with my PWD peers keeps me happy.

You Are HERE. – Six Until Me

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