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.

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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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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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Looking Ahead

The last time I wrote something on this blog I admitted that my desire, or more accurately my drive to write had diminished. Obviously, based on the timestamps, that problem still persists. Over the weekend I realized that my lack of initiative here has negatively impacted my productivity where it matters most – my professional career. I never would have guessed that this silly little (sometimes about) diabetes blog would be responsible for generating and maintaining the creative juices that flow through most of my online persona. And that those creative juices are the fuel that power the rest of my professional work throughout the day. But here we are.

As my time, energy, and focus are required elsewhere, the urge to find something to post on this space has declined. For the longest time I felt obligated to maintain some kind of illusion that I was a reliable beacon for the diabetes community evidenced by a new post every weekday. Even if that meant sharing a cat picture and writing 12 words underneath it, you could count on me.

To an extent, this can no longer be the case.

I’m not leaving. But I can’t pretend to be the diabetes advocate I was last week, last month, or last year. I just can’t. This means that I have to be more judicious with my time, and that ultimately means this blog cannot function as it has in the past.

So, when I have something to say, I’ll say it – here. And when I say it, I’ll do my best to make it worth your time to read. But I won’t be here every day. And I’m going to be okay with that.

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I’ve Got Nothing

Yesterday was the first time I shared something on this blog in almost three weeks.

Ordinarily I’d quickly put up a bunch of back-dated content to fill out the illusion that I’m publishing something here every day. But that’s not the truth. That’s not me. At least right now it’s not.

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