About My Multiple Sclerosis Secret

Two years ago I created an online space for people to anonymously share their thoughts, fears, and experiences about their life with diabetes. Since then I’ve expanded this idea to other patient communities including mental health, cystic fibrosis, chronic pain, arthritis, and lupus. Today that expansion continues with the debut of My Multiple Sclerosis Secret.

When I look at the conversation around MS online, the majority of tweets, status updates, and gifs revolve around the struggle to validate the experiences of an invisible illness. Because there are not many external manifestations of your disease, a lot of time and energy goes into defending basic truths about your health and wellbeing. My hope is that My Multiple Sclerosis Secret can become a space to help explain the realities of multiple sclerosis. My goal is to build a safe place for sharing within the multiple sclerosis community while simultaneously providing an opportunity for others to learn from people impacted by MS.

My Multiple Sclerosis Secret is safe place to share your multiple sclerosis secrets. No judgement. No shame. No stigma. Merely catharsis through honesty.

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About My IBD 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, to the launch of My IBD Secret.

In my conversations with IBD advocates, I’ve learned a lot about the struggles for acceptance and validity not only within the broader patient community, but with society at large. The common “you don’t look sick” trope often comes into play as I read the horror stories of people being accosted for using disabled parking spaces despite being legally afforded the right to use them, or the dirty looks received when preboarding a flight because you need extra time to make sure everything is in order. Your struggles are real. And while I may not have the same experiences as you, I certainly understand what it’s like to live with a disease that people generally don’t understand or have a wildly off-base perception of the realities of what it takes to live a “normal” life.

My hope is that My IBD Secret can shed some light on what it’s really like while also offering the IBD community a safe space to share their experiences and emotions – a safe place to share your IBD secrets. No judgement. No shame. No stigma. Merely catharsis through honesty.

To help make sure I get this right, I’ve partnered with some of the smartest and most passionate advocates I know, Carly Medosch (diagnosed with Crohn’s at 13), Duncan Cross (diagnosed with Crohn’s at age 17), and Kelly Crabb (diagnosed with Crohn’s at 16). With their knowledge and experiences, together we will do our best to make sure this site treats the IBD community with the respect it deserves.

If you would like to share a secret of your own, you can use this submission form.

If sharing and reading these secrets is not enough, this resources page includes links to other community and non-profit sites within the IBD ecosystem. I will continue to add new links to this page as necessary. If you have any suggestions to make, please send them to myibdsecret at gmail dot com.

Having launched sites like this for the diabetes, chronic pain, arthritis, lupus, cystic fibrosis, and mental health communities so far, I know there’s something to this “me too” philosophy that powers the sharing and connecting behind each of these sites.

I hope this works.

 

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)

Simple

The path to refining and redefining the person and patient advocate I want to be is ever-present. There will always be something I want to change, improve, or tweak – but the challenge now is figuring out how to focus my efforts. With that in mind, I’m considering this the next step in simplifying who I am – online, at least.

Going to keep it simple in 2015.

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It’s not exactly a crowd-pleaser, but it’s the most basic representation of what I’m about. Between this and the unified starting point, my hope is that 2015 will start off in the right direction. Or, I’m too concerned with my “image” and need to stop obsessing about these things.

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How Might We

It’s not the same as Mike Lawson‘s Monday Mantras…

It's #Monday! This is the #mantra I'll be focusing on this week. What's yours?

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But the number of ‘How might we’ prompts in my notebook has been steadily growing over the past few days. And I think these are worth sharing.

My notebook is collecting #howmightwe prompts.

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While the solution may not be eminent, or evident, or even feasible, these questions start the creative (and hopefully collaborative) process for me. And that’s exactly what I need right now.

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Retreat Aftermath

After 4 intense days of planning Medicine X 2015, I’m ready to get back to…whatever it is I call ‘normal’.

Our last task for the #MedX retreat was to write a word or phrase describing each of the board members. Here are mine.

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While the process was at times grueling, it was certainly rewarding. At the end of the last day each of the advisors wrote a word to represent what we meant to each other on a post-it note. The picture above is my collection of words. I was secretly hoping for ‘diet coke’ to be on all of them, but I appreciate the feedback I received.

I’ve never been part of something like this, where my input was so integral to everything that happened, and will happen. There’s a lot of work to be done before the conference next year, but I truly believe we’re on the right path.

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