Today, I Launched My Chronic Pain Secret

I’ve seen what My Diabetes Secret has done for the diabetes community. Every time a new secret is published, a resounding “me too” in likes and reblogs follow. Bringing these internal, emotional struggles to the surface has shed a new light on what it’s really like to live with diabetes. Managing that disease is more than just checking your blood sugar and taking your medication, and more and more people are starting to recognize the larger psychosocial challenges that come with living with a chronic disease.

With that in mind, I sought to expand the concept of My Diabetes Secret to other chronic disease communities. First among them is the chronic pain community and mypainsecret.com.

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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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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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“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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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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