A Response

“It is deeply disturbing that creating new ways to be anonymous or show how ashamed being sick makes you feel is something you’re growing. This is not advocacy. This is making self hatred an expectation of being sick.” (Submitted to My Disease Secret)

I created My Diabetes Secret because I saw an opportunity. I saw a chance for people to share how they really feel without needing to tie their words to their identity. Like screaming at the ocean, sometimes it’s simply enough to get something off your chest and move on. I didn’t see this form of sharing as hiding behind the anonymous logo that heads these sites, but as a collection of individual moments of realization, of self actualization, of owning their lives for better and worse. The likes and reblogs each submission receives are not a digital statement suggesting the pain and struggle shared is a good thing or one to be expected, but respecting and appreciating the act of sharing itself.

I’ve never claimed to be an expert in all of this. I think Tumblr is a pretty neat platform, and I believe the Internet has a tremendous role to play in the well-being of each and every person impacted by a chronic disease or illness. I feel that promising anonymity to anyone who chooses to share whatever they are feeling not only builds trust among all who visit this site, but it ensures the utmost sincerity with each and every character, word, sentence, and submission. In asking people to open up their hearts, minds, and souls, I’ve been greeted by hundreds of examples of the raw emotion associated with diabetes, or cystic fibrosis, or arthritis, or depression.

But you’re right, anonymous. This is not advocacy. This is merely a small component of what patient advocacy needs. Beyond the fundraising and the facts and the politicians, the voice of the patient is paramount to what all of us hope to accomplish be it passively or actively. The voice of the patient comes in many forms. Written testimony and perspective via email to a local state representative, participating in local fundraisers, literally calling upon Congress to increase funding for crucial research, changing your profile picture to sync with an awareness campaign. All of those examples have their place in the broader advocacy effort we all engage in. Just because someone’s identity is hidden, and their name is Anonymous does not mean their input is any less meaningful. The sum of these sites may not equate to any form of advocacy you are partial to, but each one of these secrets adds to the broader narrative that we are not doing enough.

We do, however, disagree on your last assertion. These sites do not promote self hatred, or indicate that self hatred is an expectation of being sick. These sites remind anyone and everyone who visit that it’s okay to not be okay. These sites remind anyone and everyone who visit that you are not alone.

I appreciate your concern, anonymous. And I value your feedback. If you want to get in contact with me to make sure we are all doing right by the broader patient community, you can find me at mydiseasesecret@gmail.com. I welcome a continued dialog on how we might improve the experience on these sites and take what is shared to make lives of all patients and patient communities better.

This is not advocacy. This is connecting the dots between what we know, what we think we know, and what we feel. This is learning from people with life experiences wildly different from our own and coming to the realization that we’re all in this together. This is compassion and honesty. This is empathy in its purest form.

(Published alongside said criticism on My Disease Secret)

About My Lupus Secret

Two years ago I created a site designed to host anonymous secrets from the diabetes community. The goal was to provide a safe place for people to share what they were feeling and experiencing without fear of stigma, shame, or judgement. But battling stigma and judgement is not unique to the diabetes experience, and that is why my expansion of the My Disease Secret platform brings us here with the beginning of My Lupus Secret.

I recognize that lupus is a big deal. I recognize that there can be struggles to legitimize your pain, your emotions, and the medication it takes to live a “normal” life – for however you define normal. I recognize that the recent revelations about Selena Gomez mean there’s an opportunity for acceptance and advocacy on a greater level while her story remains fresh in the public eye. But beyond that, I recognize that there’s a chance for the lupus community to help dispel some myths and misperceptions about what you all are going through with your words and actions each day. My hope is that this site can help with that effort.

So here is My Lupus Secret. A safe place to share your lupus secrets. No judgement. No shame. No stigma. Merely catharsis through honesty.

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About My Arthritis Secret

Two years ago I created a site designed to host anonymous secrets from the diabetes community. The goal was to provide a safe place for people to share what they were feeling and experiencing without fear of stigma, shame, or judgement. But battling stigma and judgement is not unique to the diabetes experience, and that is why my expansion of the My Disease Secret platform brings us here with the beginning of My Arthritis Secret.

I’ve had the pleasure of becoming friends with a number of advocates from the arthritis community. And while our experiences may be unique, it is not without some curious similarities. The stigma of a disease typically portrayed a certain way by the media presents stereotypes that you have to actively choose to battle each and every day. This misperception of what the medication required to manage our respective diseases means to us personally, and how these medications are interpreted by the unknowing public can incur a range of judgement and misinformed assumptions.

I know there is a strong arthritis community online. My hope is that this site offers a chance for a wider audience to truly understand what living with arthritis is like. If you’re willing to share, I want others to see what it takes to manage the pain, surgeries, relationships, medications, work, and often compounding diagnoses, along with the rest of your lives.

So here is My Arthritis Secret. A safe place to share your arthritis secrets. No judgement. No shame. No stigma. Merely catharsis through honesty.

I’ve partnered with Britt Johnson (@HurtBlogger) and Alan Brewington (@abrewi3010) to help me get this right. If you’re reading this, then you probably know the Arthritis Foundation identifies 60 different types of arthritis, and over 100 specific diagnosis within those categories. (I had to look that one up, and was quite surprised at the final tally.) That diversity provides a great challenge for a site simply called My Arthritis Secret, but I’m hoping to seize this opportunity to unify the arthritis community. Continue reading

Today, I Launched My Cystic Fibrosis Secret

I’m a firm believer in the power of the Internet’s ability to build social connections among diverse groups of people despite the most isolating situations. Since it was created two years ago, My Diabetes Secret exists as an extension of that philosophy, providing people impacted by diabetes an opportunity to share what they are feeling in a safe space, free of shame, stigma, and judgment. But as isolating as diabetes can be, I’ve met a number of advocates impacted by cystic fibrosis that deal with isolation on a much more concrete level.

This may not come as news to most of you reading this, but I was surprised to learn that people living with cystic fibrosis are advised not to hang out together. They can spread dangerous bacteria to each other (but not to healthy people), which is why the Internet is vital for finding and engaging with peers in similar circumstances. Platforms like Facebook, Twitter, and Tumblr are essential building blocks for social support and finding people who can relate. My hope is that My Cystic Fibrosis Secret can help contribute to that “me too” factor and become a reliable component of the cystic fibrosis online community.

My Cystic Fibrosis Secret is a safe space for you to share your thoughts, feelings, and fears about how cystic fibrosis impacts you – anonymously. No shame. No stigma. No judgment. This site offers catharsis through honesty.

Because I want to get this right, and there’s only so much my personal experience with type 1 diabetes can bring to this specific site, I’ve partnered with a few of the most passionate advocates in the cystic fibrosis community I know: Emily Kramer-Golinkoff, Erin Moore, and Breck Gamel. I am relying on their experience and expertise to inform how sensitive issues are managed, and when necessary, how to best communicate with the rest of the cystic fibrosis community.

If you want to share your own cystic fibrosis secret, please use this submission form.

This resources page includes links to mental health and cystic fibrosis-specific sites if you’re looking for additional information and support beyond this anonymous site.

From the beginning I’ve strived to provide a safe space for people to anonymously share what they are feeling knowing that for some, sharing is the first step to healing, understanding and connection. This mission continues with the launch of My Cystic Fibrosis Secret.

I hope this works.

Today, I Launched My Mental Health Secret

Today I flipped the switch on My Mental Health Secret. Here’s my introductory post.


I want to get this right.

When I created My Diabetes Secret, I knew there was tremendous potential for a platform for people impacted by diabetes to safely, and anonymously, share what they were feeling. It feels like we, the diabetes community, have only recently matured to the point that openly discussing the mental burden of diabetes is something that we’re moderately comfortable with.

When I began planning the expansion of the My Disease Secret platform to other communities, I put the mental health community at the top of my list because I know that we need to have larger conversations about anxiety, depression, compulsions, obsessions, and other mental health issues. There needs to be a better way to talk about our experiences. There needs to be a better way to shine the spotlight on what is really happening. My hope is that the promise of anonymity will provide a safe space for all of us to talk about these issues.

So I reached out to a couple of advocates in the mental health space. Mark, from Everybody has a Brain, and Mike from It Starts With Me (oddly enough, both from Canada) to help ensure I get this right.

With their help, I hope to build a platform for an open, honest discussion about issues like anxiety, depression, fear, compulsions, obsessions, challenges, recovery, and relapse.

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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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About Speaking at AADE15

The bow tie has landed. #AADE15

A photo posted by Christopher Snider (@iam_spartacus) on

And just like that my 24 hours in New Orleans is complete.

If you want to get to the good stuff, here’s the link for my slides, data, and additional resources I provided after my presentation – http://snider.io/aade2015.

Unfortunately, I’m not sure if I can call my presentation a success. I thought I was invited to speak about Twitter data and show off some cool graphics to a crowd that understood the basic mechanics of Twitter, but was looking for more insight into what the diabetes community has done and continues to do on Twitter. I completely underestimated the amount of time I should have spent covering the basics.

“How many of you are actively on Twitter?” For some reason I didn’t interpret the lack of hands in the air as a sign that I needed to slow down and focus on the simple stuff first:

What is Twitter? How do you sign up for Twitter? What the heck is that “#” symbol? What is an impression? How do you use Twitter? Why should I use Twitter? How do you Tweet? How do I follow you? Who should I follow? Why does this thing need my phone number? Help?!

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